Liver Woes - 12/22/11

The two week hold to get into my next clinical trial turned into four weeks. For various reasons, the start date kept getting pushed forward. Finally, on Tuesday, December 13, I started with the trial drug LY2523355. I went into the treatment center on Tuesday, Wednesday and Thursday for an hour infusion each day. On Friday, as expected, the white blood cells were dropping, so I was given an injection of Neulastra. I was already getting mouth sores with a slight sore throat. By the weekend, I was ill, spending the entire weekend in bed. The sore throat was the worst that I've ever had. The mouth sores were painful, and my fever was increasing. I had been in this position several times before and knew that I would eventually start to feel better. I just had to hang on until the blood cell counts went back up.

On Monday, I was back at the treatment center. I was given IV infusions of fluids and antibiotics. On Tuesday, I was not feeling any better, and again at the treatment center, I was given fluids and antibiotics. My weight had dropped, and the fever was way too high. I was given a mask to protect me from others. My oncologist came into the treatment room and informed me that I had practically no white blood cells, which would open me up to all kinds of infections. In addition, my liver numbers were indicating the beginning of liver failure. She would have to hospitalize me and get things under control.

After my infusions of fluids and antibiotics, the oncology nurse wheeled me to my room on the isolation floor of the hospital. Everyone that came into my room had to wear a mask and gloves. My immune system was compromised, and no chances were to be taken. I was given infusions of fluids and antibiotics all day and night from Tuesday to Thursday. Slowly, my fever started decreasing, the mouth sores were healing, and that awful sore throat was gone. On Thursday, my oncologist told me that my white blood cells were up to 5,000. That's not great, not even normal, but it was high enough for me to leave the hospital. Before I left, I was given pills for my low potassium, a shot of Procrit in my thigh to boost the red blood cells, and a 7-day prescription for more antibiotics. I felt like a new woman when I left the hospital.

On Tuesday, while I was in the hospital, I was given a chest x-ray and a CT Scan. My cough and shortness of breath are worsening, and the scan showed more progression in the lungs. The biggest problem is the liver, however. The tumors there are extensive and diffuse, and the liver had started failing. My oncologist decided that this was the time to have "the talk". Without a fully functioning liver, in six months or less, it could all be over. I needed to decide how I wanted to die. Would I like the doctors to attempt to resuscitate me if I stopped breathing? Would I like for them to shock my heart if it decided to stop beating? A social worker came to talk to me about my decisions and gave me papers to fill out. I also called my sister, and we have a plan of action, just in case things take a turn for the worst.

There are several things that can be going on with my liver. It could be a tumor flare. It could be that the liver tumors have become resistant to treatment because I've been on so many different treatment protocols. The poor liver function could be preventing the chemotherapy drugs from metabolizing. The dramatic drop in white blood cells could also keep the liver from functioning properly. At this point, we just don't know what happened.

So the plan is to get the blood cell counts up so that I can have a Cycle 2 of this treatment protocol. It's hard to say that after the first treatment cycle that it is not working, so we're going to continue as planned. Hopefully, I won't have to be hospitalized after this next cycle. Cycle 2 starts on Tuesday, January 3. January also marks my four year metastatic breast cancer anniversary. No matter what happens, I've been blessed.

She Died - 11/16/11

My MBC sister with the same name as mine died on Sunday. I was not prepared to hear that today. My oncology nurse told me that even though it was against policy. She thought that I would want to know. I'm glad that she broke protocol, and it goes to show that with oncology nurses, it's not just a job. They really do care about their patients. She asked that I not say anything to anyone at the treatment center, and I didn't. Of course, it's on my Blog now, but someone would have to be totally beyond Einstein to figure out who told me.

I teared up immediately. She was younger than me. She had two boys that she loved dearly. The last time that I spoke with her, she was going to ask for a break from chemotherapy because of the fluid build-up in her lungs and stomach. She had a drain put in for her stomach, but the lungs were giving her the most problems. She was on supplemental oxygen and in a wheel chair. I thought she would come back around after a break. We both hoped for that. We both prayed for that. What happened? All we know is that she checked into the hospital on Friday, and before they could get her into hospice care, she died on Sunday.

I'm devastated. All I can think about is her beautiful bald head and that smile on her face telling me about her faith. She pulled me in. I used her faith to comfort me selfishly. She died, she died, she died . . . . I kept repeating it to myself, because I didn't want to believe it. Selfishly, again, I felt my own immortality.

Today was supposed to be a short day, but that didn't happen. Stability is present in my bones, but my liver and lungs have several new tumors. One of the liver tumors grew from 9 x 8 millimeters to 11 x 11 millimeters. I also have new tumors, "pulmonary nodules" and "lymphangitic spread of neoplasm" in the right lung, whereas previously, only the left lung was involved. One of the lung tumors grew by 1 millimeter (from 10 x 7 millimeters to 10 x 8 millimeters). Apparently, my shortness of breath, dry cough, fever, headaches, and neck and back pains may have something to do with these inflamed pulmonary nodules in my lungs.

Again, because of progression, I am kicked out of the clinical trial. I offered my research nurse my remaining seven days worth of Xeloda pills so that someone else could benefit from them. She said that she would be glad to take them, especially for a patient who didn't have insurance. The pills are paid for this cycle, and I would only have thrown them away, as I'm sure the drug company will not take them back. They are expensive a$$ pills that I've only been on for less than two months!

I'm on a two week hold to start the next clinical trial. I'll either get the tried and true Ixempra (one IV infusion, once every three weeks) or the trial drug LY2523355, which involves giving myself injections at home. I'm hoping for Ixempra, because it's easier. I don't mind shooting myself in the stomach with a needle, but I'd rather not do that, lol. My research nurse said that I could have someone do it for me. Now is the time to enlist some gullible friends, lol.

Because of my lung function, today I was given an IV infusion of steroids and an antibiotic. I was also given a prescription for a Z-pack of antibiotics (2 pills on day one, and then one pill per day for the next four days). It was also time for my Zometa infusion for my bones, so I had that, too. My oncologist also wants me to start taking over-the-counter Naproxen (i.e., Aleve). We are still having this ongoing debate about me preferring Advil, lol.

My oncology nurse was assessing my port for my drugs today, when she told me about my MBC sister with the same name as mine. How dare it take her away from her boys! How dare it take away her life! The only consolation is that she has no more worry and no more pain. However, I'm angry all over again! This damn cancer has a hell of a fight on it's hands if it thinks I'm going quietly. I'm fighting for my MBC sister, too, even though she is no longer here. Try fighting Tiger. If she goes down, you're going with her. Stupid Ass, cancer! You really screwed up this time!

End of the Rainbow by McKinley Mitchell:

I went running to the end of a rainbow
Looking for a treasure they said I would find
I found nothing but heartaches and troubles
I'm about to lose my mind

On the way, the load got heavy
And the burdens got hard to bear
None of my friends was there to help me
Left me standing in the middle of nowhere

With a heart full of pain, I was lost
So blind I couldn't see a thing
I couldn't even remember my name
They talked loud and clear

Every word, my ears could hear
In my heart was heavy
I couldn't even move
I just stood there like a silly fool

I believe...I'm going...back home
To start all over again
Left my rainbow behind me
Right where I, I began

(Listen)

Going, going, going, going home
I'm going home
(I'm going home...to the end of the rainbow)
I'm going home
(I'm going home...to the end of the rainbow)
Going, going, going, going home
I'm going home...

Rest in peace my dear, sweet MBC sister with the same name as mine.

Scan Anxiety - 11/14/11

I don't really freak out when it's time for my scans. It's an unavoidable necessity, and that's how I try to look at it. Of course, if I didn't have to have the scans so often or at all, it would be better, but you can't wish for something that you know is not going to happen. I would be lying if I said there wasn't some anxiety associated with having scans. I don't get to the point of refusing to go or getting sick over the thought of it. I go into the machine hoping for stability, if not regression, and no more progression. What bothers me is that I've been hurting a lot lately. Pain has always been a good indicator for me that something is not right. The pain is usually in the neck, head, and shoulder areas and sometimes on the right side of my back, below my rib cage. So, I'm thinking that I won't be given a stability diagnosis this time. The glass is half empty, pessimistic attitude is not a good one to have, but pain makes you irrational at times. For all the side effects that Xeloda is putting me through, I expect it to be working. Pain tells me that it's probably not.

I've stopped drinking the contrast from the oncologist's office and just show up to drink the yummy lemonade contrast an hour early for my CT scan at the imaging office. That has solved one problem. It's hard to get two bottles of the chalky, vanilla flavored (nope) contrast down. Both still give me stomach issues afterwards throughout the day, but at least, the lemonade contrast is tasty and tolerable.

I've also started to allow the technicians at the imaging office to use my port. I'm very leery of just anyone using the port, but the last time when they couldn't use the veins in my one good arm after the technician from the hospital for the bone scan had exhausted them, it wasn't so bad. Coming away with only a slightly bruised and sore arm is a plus.

I've also warned them ahead of time that, when they inject the dye in the vein or the port, they have to do it slowly so that it doesn't burn. Having scans every 3-4 months has taught me a lot about how to make these sessions go more pleasantly.

Laying down in the machines isn't that bad. The CT scan doesn't take too long. The bone scan takes over an hour some times. I'm not claustrophobic, and I usually just rest and relax while I'm in the machines. The top plate of the machine for the bone scan gets pretty close to smashing your face in, but eventually, that fear eases up, too.

I'll have two scans tomorrow. I'll go in for the radioactive dye injection for the bone scan, and then there's a three hour wait until I can be scanned. In the mean time, I'll go and drink the lemonade contrast, have the CT Scan, where they'll inject another dye contrast. Afterwards, I'll go back and have the bone scan. On Wednesday, I'll get the results from my oncologist.

Doesn't sound too bad, does it? So where does the anxiety come in? The interruption of a normal day, waiting for the results, the sticks in the vein and the port, dealing with the stomach issues afterwards, and the question of what my body is doing this month wears me down mentally. If it's progression, it's on to a new treatment regiment, with its unknown side effects. If it's stability or regression, it's a continuation of the current treatment regiment and its known side effects.

It's such a relief to be done with scans at the end of the day. I know that I'm free for another 3-4 months. I hope these new pains are scar tissue, new bone material building up and filling in the holes from the cancer eating through my spine, pelvic, skull, and right clavicle. I hope that my liver and left lung are benefiting from the Xeloda. They were the problem children from the last CT scan. I want a good report. I really do. But I just don't know. I will not know until I see the oncologist on Wednesday. Until the results, it's constantly on my mind every time my oncologist looks at my medical chart and announces "it's time to schedule you for your scans."

No food or fluids are allowed after midnight tonight. No problem. I'm usually out by 9:00 p.m. most nights any way, lol.

Three Miles a Day - 11/3/11

I can remember when three miles was barely a warm-up. I can remember when I didn't get into a smooth, running groove until six miles or so, and I could hold it if I was fueled properly for 26.2 miles. But for the life of me, I can't remember the beginning of my running career when three miles was a challenge. And, really, I should say one mile is a challenge. I've begun training (again) to get my energy and oxygen deprived body accustomed to walking/running every day. The mileage isn't important right now. That will come in due time. But I have to relearn how to move every day. And I have to relearn that lesson with less oxygen, low blood cell counts, fatigue, and pain.

It's hard. It's frustrating. Nevertheless, I am determined. I keep thinking about what I once could do and not totally focusing on what I can do for now. November 1 was easier than November 2. I'm hoping today will be easier than yesterday. It's just three miles. A lot of people who don't train can go out and walk three miles. A lot of people walk effortless for one mile. I see them every day as they pass me walking from the parking lot to the various State Offices in the downtown area. I can remember when co-workers commented on how fast I walk. Now I sweat and pant desperately for air as I trudge the one mile, trying to keep them in sight. Looking ahead, I'm constantly thinking, four more blocks, three more blocks, two more blocks . . . . Did they move the building, lol?

My partially numb left foot may be an advantage as I rebuild the mileage. The tips of the toes tingle, but the neuropathy has pretty much numbed the foot from mid-foot to the toes. The tingling is irritating, but, so far, it doesn't hamper being on the feet for long periods of time. I physically get tired and want to sit down before my legs and feet specifically give out. That's a good sign that my legs and feet are up for the challenge, but it's a bad sign that my body in general is in poor condition.

Yesterday, I could only walk the three miles. I had a fever and neck and shoulder pains. I was so cold on a bright, sunshiny day, even with a hat and two long-sleeved shirts. I saw runners out in shorts and short-sleeved shirts, and I envied their even pace and smooth strides. Surprisingly, the three mile walk was only about five minutes longer than the three mile run/walk the day before. The major goal is to finish the three miles under an hour. It's not much of a goal, but it's attainable and doesn't stress me out too much. On Tuesday, I finished in 53 minutes, and on Wednesday, I barely made it in 58 minutes, picking up the walking pace in the last mile to my townhouse. I plan to get the three mile course I've mapped out under 45 minutes, and then I'll do a 5K to truly see where I am.

The 5K has always been my least favorite distance. I think it's because I always had problems just going out as fast as I could and holding it for 3.1 miles. According to my spreadsheet, I've only done three 5K races. My PR for 5K is 27:17 in 2004. My last 5K in 2009 was 31:08. I can't touch either one of those times now, but if I can get to 45 minutes, I'll be happy. And then I'll have to tackle four miles, five miles, six miles . . . . But right now, three miles is about all I can handle.

I can run for a block before I get dizzy from lack of oxygen. It takes me two blocks to breathe comfortably and then I can run another block. I'm hoping that as my body becomes accustomed to surviving on less oxygen that I can run two blocks and walk one block for recovery. Ideally, I would love to get to the point where I can run a mile before taking a walk break. I've mapped out a pretty flat route, so that I won't have the added challenge of tackling an uphill climb. That's coming from someone who would use hills as speed work, because she hated running on a track for intervals. Wow! Things have really changed. Now I walk all hills, and I love 12 or 24 hour races on a track, because I'm only 1/4 mile from my drop bag and a camp chair, lol.

The best thing about my three miles a day routine is that I get to be outside. It makes me feel better mentally to be able to still move although I am incredibly slower. It's raining and very cold today, but I don't care. I'm still a runner at heart, so a little wetness and coldness are not going to scare me off. I'll still be outside on a beautiful, rainy, and cold day, dressed like I live in Alaska, lol.

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?

A Visit to the Emergency Room - 9/20/11

I consider myself a reasonable woman. I seldom go off the deep end. I evaluate the situation, make a rational decision, and hope for the best. So when I started having inexplicable chest pains that radiated into my back on Thursday night as I drove to Cleveland, OH for the North Coast 24-Hour, I pulled into a rest area, took a couple of Advils, and fell asleep for about six hours. I woke up Friday morning refreshed with no chest pains and ready to finish up the drive. Some where between Cincinnati and Columbus, the chest and back pains came back. Again, I pulled into a rest area, took more Advil, and took another nap. For a second time, I woke up with no pain. This was not normal. I was not real sure what was going on.

I finally arrived in Cleveland, got some really good take-out food at a Thai restaurant, and went to the Motel 6. However, I wasn't able to finish the food. The chest and back pains were returning, and now I was just nauseous. So, I took more Advil and went to bed early. At least with all of this sleep, I thought, I should manage to stay awake for the entire 24 hours and get some good mileage. But what if the pain continued?

On Saturday morning, I drove to the race location at Edgewater Park that sat on Lake Erie. It's a beautiful park, and we were having a wonderful day, slightly overcast and just cool enough. I quickly found my running buddies. Fred (OH) had a large yellow tent that was set up on the outskirts of the running path, along with dozens of other tent set-ups. He would share his space with Rosemary (KY), Karen (TX), and me. Nancy (OH) was going to crew for Fred, and his mom was going to spectate and cheer him on. Since it's the USATF 24-hour national championships, he wanted to have a good showing. He ran 93.02 miles for 3rd place in his age group. I'd say that he had a great day. Karen and Rosemary also ran great races, finishing 1st and 2nd, respectively, in their age group.

I managed 45.94 miles, far less than I was planning. The chest and back pains started early, and it was difficult to even walk. I got into the routine of running/walking until the pain occurred, and then taking Advil and relaxing with Nancy and Fred's mom until the pain subsided. I would then get back on the 0.90075 mile asphalt loop for a few more laps. During the night for one of the pain breaks, I decided to take a nap, which, of course, turned into a six-hour sleep. Once the sun was up and it wasn't so cold, I went back out onto the loop for more mileage. The chest and back pains had not subsided during the night, but I could still walk slowly enough until time was called.

The return trip home on Sunday was the same as the drive to Cleveland. I would drive until pain stopped me, pull into a rest area, take the Advil, sleep until I felt better, and then continue driving. At this point, I was thinking that I should just get home and get to the emergency room. But when I got home, I felt better. I took a shower, got into bed, and on Monday morning, I was back at work. But now I had a head cold. I guess that cool breeze coming off Lake Erie during the race may have pushed me over the edge. Chest and back pains were still coming and going. I had a fever, and I couldn't seem to get warm. That night in bed, my entire body hurt, and no amount of pain killers seemed to help. Before I knew it, I had started crying, the covers on the bed engulfing me in a ball. My cell phone rang and, desperate for a distraction, I answered it.

"Are you crying?" he asked. I said "yes" as I burst into another wave of sobs.

"What's wrong?" he asked. "I am so tired of hurting. I am so tired of the pain," I told him.

"It will get better," he said. "Not if it keeps progressing," I whined.

We silently sat on the phone. He listened to me sob, and eventually the tears stopped. We began to talk, and he made sure that I laughed before we got off of the phone. I can't remember if it was something about his dog, his mom, or his son. I just remember laughing a little through the pain before we said good night.

On Tuesday, the pains were worse. After I got enough pain killers in me, I finally made it to work. I only stayed an hour before I finally decided that I was going to the emergency room. On Wednesday, I had to do all of my preliminary scans for the new chemotherapy regiment that I will start at the end of month, and I would have preferred to wait until I saw my oncologist, but now I was thinking that I could be having a heart attack or maybe there were blood clots in my lung. I was hospitalized for five days in 2003 because of blood clots in my left lung. The blood clots had occurred from over exposure to the five weeks of radiation treatment that I was having at the time. I also knew that blood clots could occur during chemotherapy, so it was worth it to get the situation checked out.

When you fill out the paper work in the emergency room and you say that you are having chest pains, you are immediately moved up on the list. They did an EKG that showed that I was not having a heart attack. They then did a CT Scan that showed that I did not have any blood clots in the left lung. The emergency room doctor said that, from the CT Scan, it appeared that I had metastasis on my sternum. I have metastasis in a lot of areas, but the sternum is not one of the locations that my oncologist and I have discussed. I was simply told to go home, take the pain medications, and follow up with my oncologist. Before I left, they gave me liquid potassium for good measure. That stuff really tastes yucky!

On Wednesday, I went in to have the dye injected into my veins for the bone scan that I would have three hours later. In the meantime, I went to have the CT Scan. I drank my two tall cups of yummy lemonade contrast (that would later give me diarrhea for the remainder of the day) before they called me back into the scan area. I told them about the CT Scan of my chest at the emergency room the day before, so they called my oncologist's office to see if that CT Scan was sufficient. She told them that it was fine and to just do the CT Scan of the pelvis and abdomen. After the scan, I went to Subway for brunch, a six-inch veggie sandwich. It was going to be a long day and who knew when I would get a chance to eat.

After brunch, I went back to the hospital for the bone scan. It took over an hour. We had to take a break in the middle because the contrast from the CT Scan was doing a number on my stomach. Afterwards, I headed to the oncologist's office. In addition to weight, temperature, and blood pressure, the lab nurse had 10 tubes ready to collect blood. Since the technicians had exhausted my veins for the bone scan, the CT technicians had to access my port for the radioactive contrast, and they left the tube in for the visit to the oncologist's office. My lab nurse for the day is a good vein finder and sticker. Although I really wished she had used the port, she insisted on finding a vein in my now bruised and swollen arm. She found one she liked, poked the needle right in, and began filling the tubes. At least she got it on the first stick.

A patient and her lab nurse were next to us, and we hear the patient say that she is feeling light-headed and that she feels like she's going to pass out. And she did! Her eyes rolled back into her head. She was sweating and mumbling. Other lab nurses were fanning her, putting cold compresses on her head and neck, and calling her name. And my lab nurse is still drawing blood from my vein, as she scooted her rolling stool closer to me to avoid getting hit in the head by the now flailing patient and the onset of nurses and doctors coming to the rescue. "Don't you pass out on me," she said jokingly. "We have a good vein. I'm not stopping until we fill up all ten tubes." My lab nurse and I were hysterical. We felt bad for the other patient, but what could we do? We had those tubes to fill before that poor vein blew.

Finally, I was handed a urine cup to fill, and then I was taken into a room for my visit with the research nurse and my oncologist. The research nurse hooked me up to the EKG machine while she listened to the story of my life for the past week. When my oncologist came in, I had to retell the story while she examined me. "You know the hospital is now going to think I can't control my patients' pain," she joked. Yeah, but I didn't want people asking, did she die from the cancer? No. Did she die from the treatment? No. She died because she refused to go to the hospital and have a blood clot checked out that broke off from her lung and went into her brain. It wasn't funny, but we all nervously laughed at my reasoning.

My oncologist and I have had the pain management discussion before, but this time, I'm going to really try and play by the rules. I tend to wait until I can't tolerate the pain before I take pain medication, and then I'll take Advil. If I won't take the prescription pain killers, then my oncologist has always wanted me to take Aleve instead. Aleve does not work for me. Hydrocodone does not work. Oxycodone is the break through pain killer that I have been prescribed to go along with the Oxycontin for regular dosing. One of them makes me nauseous, but at least I'm pain free for two hours. "Take the meds," she said, "at least until we get your tumors under control."

It turns out that the emergency room doctor misread my CT Scan. I do not have metastasis on my sternum. I have several new tumors in my left lung. With the tumor flare, my lung became inflamed, pressing against the sternum, which caused the pain in my chest and back. What the emergency room doctor saw on the scan was a bruised sternum. My goodness! In a month, my lung had gone from two stable tumors to several tumors (there's a cluster in the lining of the lung) that had inflamed the lung so much that it had tried to break out of the chest bone. This cancer is trying to kill me.

The research nurse brought in three more tubes. She said that she would ask my oncology nurse to take the blood from my port. They also gave me a 30-minute IV bag of steroids to get rid of the inflammation and to calm down all of the heightened nerves. Wednesday night was the best night of sleep that I've had in two months.

It's hard for me to take pain medication if I'm handling the pain. But it's best to keep some pain medication in my system so that I'm not starting from ground zero. I realize that and hopefully, I won't get in another emergency room situation any time soon. I've been alternating the Oxycodone and the Advil, holding off the Oxycontin. I feel like I'm taking drugs all day long, but I'm really only averaging about every 3-4 hours. Regardless if I'm in pain or not, I take something. I'll get it under control. Next week I'll start Xeloda. I'm already thinking that I may have to invest in some adult diapers for the diarrhea that may come with that chemotherapy regiment.

It's Friday, and I didn't think I would be able to go to the Georgia Jewel 50 Mile in Dalton, GA this weekend. But I'm going. There's a 30 hour cut-off, the head cold is gone, I have pain meds, and the trail shoes are packed. I'm ready!

Xeloda - 9/15/11

They kicked me out of the clinical trial. That's what happens when you have progression during treatment. My liver and lung tumors are still stable, but my recent PET Scan showed more tumors in my spine and pelvic bone. I had been having increased pain in my right hip for about a month, but I had also been trying to ignore it, which isn't the easiest thing to do. Sometimes the pain is so bad that I become nauseous. Cancer is a tricky and evil, little devil.

I was hoping that I could have radiation on the right hip, just as I had on the left hip last summer. However, there are so many areas of progression on my right hip that my oncologist says that it would be impossible to "spot weld" me. Radiation is very precise. We can't go to the radiologist and say, "radiate the whole right hip."

I'm now on a two-week hold to get into another clinical trial. I'm not at the point that I want to give up, but this morning, I have to say that I understand cancer patients who throw in the towel. It's all mentally and physically too much to handle. Getting ready for work this morning with so much pain in my hip that I thought I'd throw up, I also understand why cancer patients quit their jobs and start collecting disability. It's relatively easy to get disability if you're diagnosed as a Stage 4 cancer patient. I'm not in love with my job, but I do prefer to continue to work. However, today all I wanted to do was to climb back into the bed and cover my head. Even though I've been off the Taxol for a while, the neuropathy in my hands and feet is lingering. The pain's not bad, but the tingling and numbness still make it difficult to get things done. Taking a shower just involves too much rubbing, and the tingling is bad for several hours afterwards, but I can't walk around funky and scaring people either.

Yesterday, I had the PET Scan. I couldn't eat prior to the scan, and I can't take any pain killers on an empty stomach, so I was in pain and could barely walk all day. I could have eaten after the scan, but all I managed to get into my stomach was some ginger ale. The nausea was too bad at this point. After the scan, I had to meet with my oncologist and then have the Zometa infusion only. Since I'm no longer in the clinical trial, there are no more Avastin infusions and I can discontinue taking the daily pills of Everolimus (or placebo). The contrast that I drink before the scan gives me diarrhea and on top of the nausea from the pain, I didn't know if I was coming or going. I've been on Zometa for almost four years, but I still tend to have an allergic reaction every now and then. Of course, yesterday would be that day-chills, fever, and body aches. Some time during the night, the fever broke, and I finally got warm. I was then able to eat a little, take some pain killers, and then sleep soundly for the rest of the night. And when I say soundly, I mean that I only woke up every hour for the hot flashes, which are pretty routine. Consequently, I'm just a little off-base this morning. I have enough pain killers in me now to downgrade the pain to "annoying".

Before each clinical trial, there are always several tests that have to be done. Next week I'll have another CT Scan, even though I just had one last month. I'll also have a bone scan and an EKG. All of the blood work has to be repeated.

The new clinical trial involves Xeloda. Xeloda is a chemotherapy pill, similar to Everolimus. I'll take the pills twice a day, every day, for two weeks, and then I'll have a rest week. That will complete a cycle. The cycles continue until progression or toxicity. Xeloda is supposedly a relatively easy chemotherapy, if you follow the rules. My oncologist told me several times during our discussion to be careful of the diarrhea. If on day 10 there is uncontrollable diarrhea (defined as spending more time on the toilet than off of the toilet) immediately stop taking the Xeloda and call the treatment center. Do not (and she repeated this several times) continue to take the pills up until day 14. She said that cancer patients are so good about staying on their medication that they become stubborn about stopping, thinking that they can tough out the side effects. This will not be the time to be a trooper. She said that it was like having a fire and then throwing gasoline on it. By day 14, she has to admit patients to the hospital because they can not stop the "pooping" at that point. If I call the treatment center, they can adjust the dosage for the next cycle and prescribe something for the diarrhea. This side effect can be fixed, so don't suffer through it.

The other common side effect is redness, swelling, blistering, and peeling skin from the hands and feet, the infamous hand-foot syndrome. Just what I need-some company for my neuropathy. It's important to keep the skin well moisturized (udder cream is recommended), and cold compresses will help some with the redness and swelling. Flip-flops are the shoes of choice.

Other than that, the other possible side effects are typical of all chemotherapy drugs-fatigue, hair loss, vomiting, nausea, fever, infection, bleeding, mouth sores, and dizziness.

There are three "arms" of this clinical trial. We won't know which arm I'll be in until the end of the month. If I'm placed in Arm A, in addition to the Xeloda, I'll have a 60 minute infusion of Ramucirumab DP (the trial drug) once per cycle. If I'm placed in Arm B, I'll have Xeloda and a 60 minute infusion of IMC-18F1 (another trial drug) once per cycle. If I'm placed in Arm C, I'll just have Xeloda. The good thing about being in Arm C is, if I have further progression, I won't get kicked out of the clinical trial right away. I'll then be placed in Arm A or Arm B until I progress again or until the toxicity warrants taking me out of the trial. Not that I have any options, it all sounded good to me, so I signed and dated all 29 pages of the consent form and had my little consultation with the research nurse.

While I was typing this post, I got a call from my oncologist's office. My newest issue is low potassium. I was instructed to drink plenty of orange juice and eat lots of bananas. I love orange juice. I absolutely hate bananas. I can't even stand the smell of them. While I had her on the phone, I asked if I could stop taking the blood pressure medication since I was no longer having Avastin, which has been spiking my blood pressure for the last 10 months. I was told that I have to continue taking the pills for another couple of weeks to see if my blood pressure stabilizes. Now that I think about it, in my delirium, I forgot to take the pill last night, so I'll make sure that I take it tonight.

I'm debating whether I should go to the North Coast 24-Hour in Cleveland, OH this weekend. I've had too much pain to run/walk this week. Long periods of sitting makes the pain in the hip worse, and it's a 9-10 hour drive. Two weeks ago at the Woods Ferry 24-Hour in Chester, SC, I was only able to do 31 miles. I was just too tired and had too much pain to make a serious go at it. I took a six hour nap after my first two loops (7.75 miles per loop), and then I just hung out with the other runners and volunteers after my next two loops. I did a little better this past weekend at the Bartlett Park 50K in Memphis, TN, shaving off about 45 minutes from last year's finishing time. I felt good all day, managing the pain killers well enough that I wasn't in too much pain. So, I'm not sure how North Coast will go.

Fortunately, life goes on. Maybe I should start training in flip-flops. Or maybe now would be a good time to start running barefoot.

Article from the Metastatic Breast Cancer Network - 9/13/11

13 Facts Everyone Should Know about Metastatic Breast Cancer

1. No one dies from breast cancer that remains in the breast. The lump itself is not what kills. The metastasis of cancerous cells to a vital organ is what kills.

2. Metastasis refers to the spread of cancer to different parts of the body, typically the bones, liver, lungs and brain.

3. An estimated 155,000 Americans are currently living with metastatic breast cancer. Metastatic breast cancer accounts for approximately 40,000 deaths annually in the U.S.

4. Treatment for metastatic breast cancer is lifelong and focuses on control and quality of life vs. curative intent. (“Treatable but unbeatable.”)

5 About 6% to 10% of people are Stage IV from their initial diagnosis.

6. Early detection is not a cure. Metastatic breast cancer can occur ANY time after a person’s original diagnosis, EVEN if the patient was initially Stage 0, I, II or III and DESPITE getting annual checkups and annual mammograms.

7. Between 20% to 30% of people initially diagnosed with regional stage disease WILL develop metastatic breast cancer.

8. Young people DO get metastatic breast cancer.

9. There are many different kinds of metastatic breast cancer.

10. Treatment choices for MBC are guided by hormone (ER/PR) and HER2 receptor status, location and extent of metastasis (visceral vs. nonvisceral), previous treatment and other factors.

11. Metastatic breast cancer isn’t an automatic death sentence. Although most people will ultimately die of their disease, some can live long and productive lives.

12. There are no hard and fast prognostic statistics for metastatic breast cancer. Everyone’s situation is unique, but according to the American Cancer Society, the 5 year survival rate for stage IV is around 20%.

13. October 13 is National Metastatic Breast Cancer Awareness Day. To learn more about it as well as resources specifically for people with metastatic breast cancer see www. mbcnetwork.org. We appreciate your support on October 13 and throughout the year.

300 Marathons/Ultramarathons - 8/31/11

My 300th marathon/ultramarathon is scheduled for this weekend at the Woods Ferry 24-Hour in Chester, SC. I hope that I have not jinxed myself by counting the chickens before the eggs hatch (or something like that), lol. With my luck, a root could grab my toe and snap my ankle before I get the minimum 26.2 miles for the race to count. Nevertheless, I am so excited. I'm trying to remember if I was this excited when I hit #100 and #200. I remember my 100th finish, but I had to look at my spread sheet to jog (pun intended, lol) my memory of which race was #200. All I remember about #200 is that the target race kept moving because I DNF'd several races in 2008. That year, the bone pain in my hips and back slowed me down immensely, and I missed several cut-offs for races. This year, I have been very careful to schedule races that I was more likely to finish than not to finish, so that the target race wouldn't change too much. My last two races, however, really frazzled my nerves.

The race director for the Marquette Trail 50K in Marquette, MI threatened to cancel the race because enough entrants had not registered. I had already sent in my registration, but more importantly, I had already bought my plane ticket. That was the biggest expense. The goal of hitting #300 was inconsequential, because I could always find another race. So, I sent out a desperate e-mail to all of the runners in my address book asking them to consider running the race and to also forward the e-mail to their running friends. From the replies, no one I knew was going to make it, but a few weeks later the race director sent out another e-mail stating that enough runners had registered to have the race. Whew!

Then, the week of the race, a 9-hour cut-off was posted on the website. I have not run a 50K in under 9 hours in over a year, and it was on a much easier course, the Gator Trail 50K in Lake Waccamaw, NC. I went to the race any way, and to my surprise, my running buddy, Henry (WI), was at the race. Bless his heart! When I told him of the cut-off imposed for the 50K (even though the 50 milers had a 13 hour cut-off), he said that he had not seen the update on the website, and as far as he was concerned, if the course is kept open for the 50 milers for 13 hours, we should not be pulled. Well . . . we missed the cut-off for the aid station at 10 miles by 30 minutes, but the volunteers did not say anything and we surely weren't going to say anything, so we continued. We also missed the cut-off by an hour for the second aid station at 18 miles, but the volunteers were gone, leaving fluids and snacks on a table for us to help ourselves. Henry said that he was going to keep me in his sight and make sure that I finished. I felt so sorry for him because I was so slow and really struggling to keep up with him. I told him several times to go ahead because he would have no trouble making the 9 hour cut-off. He refused. Right before the finish line, after 11 hours (2 hours over the cut-off), he turns to me and says that we have to cross the finish line together. It was almost a week after the race before the results were posted. Both of us were listed with official finishing times, completing #298 for me.

Timmy's Challenge Marathon in Cairo, WV lived up to it's name when I received an e-mail from the race director stating that the early start would not be officially timed because of the chip timing system that he was using. An early start meant a 9-hour cut-off, and the regular start had a 7-hour cut-off. The Blister in the Sun Marathon (#297) was completed in 7:35:15, so I was in a panic. I decided to go to packet pick-up early and talk with the race director. I wanted to make sure that if I took the early start that I would be given an official finishing time and listed in the results, because there was no way that I could finish in 7 hours. He assured me that I would get an official time, but that I couldn't use it to qualify for Boston (hah!), that I would not be eligible for awards (another hah!), and that early starters would be listed after the regular starters, even if an early starter had a faster time (again, hah!). I was fine with the rules and proceeded to the start line with 26 other early starters. In the end, the race director made two separate finishers' lists, one for the regular start and one for the early start. The early starters are not listed on http://www.marathonguide.com/, but both finishers' lists are on the race's website, so the race counts as #299.

For 299 marathons/ultramarathons, I have 299 stories, but I won't even attempt to recall all of them here. The plan is to run eight 7.75 mile loops at the 24-hour this weekend, which will give me 62 miles, but really, anything over 4 loops (31 miles) will be great. After this weekend, I will have run 125 ultramarathons and 175 marathons for a total of 300. This number is minuscule to my running buddies. Henry completed #743 at Marquette. That number is obsolete now, of course, because he's already run one or two more races since then. Larry (TX) has 600+; Jim (CA) has 735+; Eugene (CT) has 400+; and Eugene (IL) has 341+. I really am the "newbie" when it comes to the number of endurance races completed. Because some of my running buddies are not members of the running clubs that are accumulating endurance runner statistics (Marathon Maniacs, 50 States Marathon Club, and 50 States and DC Marathon Group), I don't have access to their published completions. Running buddies, Terri (SC), the race director for the 24-hour that I'll attend for my 300th, Fred (OH), and Rob (TN) are super runners who have been doing this for decades, and there's no telling how many finishes they have. Furthermore, their finishes are primarily ultramarathons. They rarely run marathons. I am not even worthy of being in such a group of elite runners, but like the true running buddies that they are, they tolerate me trying to be like them.

I ran my first marathon in 2001 at the Country Music Marathon in Nashville, TN. Doing the math over 10 years, that would average about 30 endurance races a year. However, that's not the break down at all. In 2001, I only ran one other marathon and that was the Rocket City Marathon in Huntsville, AL. I shaved off a whopping 40 minutes from my first marathon and thought that the trend would continue. Needless to say, I was a little naive in the early days about marathons, lol.

In 2002, I ran the Country Music Marathon almost an hour faster than the year before and also added the St. Jude Marathon in Memphis, TN. In 2003, I was diagnosed with breast cancer, and chemotherapy proceeded to slowly kick my butt into inactivity. I missed the Country Music Marathon because I was too sick to participate. I remember lying on my couch and watching the news coverage of the race on television, crying my eyes out. During the spring and early summer, I work a part-time job. Weekends are optional when we get a little behind on projects, but since I couldn't run the race, I got up off the couch and went to work a 7-hour shift and was sick the whole time. I was still upset about missing the race, but at least I was making money to fund future races, so it was all good, lol. Later that fall, after chemotherapy, the mastectomy, and radiation, I managed to complete my only marathon for the year at the Louisville Marathon in Louisville, KY.

In 2004, my ultramarathon career began. I completed 10 ultramarathons, which included my first 50 Miler at the JFK 50 Mile Run in Boonesboro, MD. After 16 miles of the Appalachian Trail and 26 miles of the flat, dirt/gravel canal path, I remember running the last 8 miles of the rolling, country roads. I felt like a winner, and I didn't know how I found a last burst of energy to pass so many people. Then I saw the finish line, and I cried my eyes out. I was so happy to be there and to still be able to run after my trying time with breast cancer the year before. In addition to the ultras, I also ran seven marathons that year. I finally had 10 states completed to join the 50 States Marathon Club and the 50 States and DC Marathon Group. I also signed up for the UltraList. I never post to the UltraList, but I love reading the e-mails every day that I get in digest mode. I have learned a lot about ultrarunners, ultrarunning, gear, nutrition, and races from the UltraList. It's just a great source of information.

In 2005, I ran 47 marathons/ultramarathons in 41 different states. I earned 10 stars (Titanium Level) in Marathon Maniacs, becoming Maniac #245 in 2006. The club has an unbelievable 4000+ members now! Prior to 2004, I did not realize that it was possible to run more than three or four endurance races a year without becoming injured or burnt out. Larry (TX) explained to me that if you are already trained to run a marathon, why not just keeping running marathons instead of taking time off, reducing your mileage, and having to retrain all over again? It made sense to me, but I'm also very gullible. Those in the 50 States Marathon Club and Marathon Maniacs were out there every weekend, and I didn't want to miss all of the running parties. Nothing fatal happened in 2004 with 17 endurance races, so I stepped up my game, put on my big girl panties, and ran with the other megamarathoners.

There was a lot of adventure in 2005. I had my first DNF in December at the HUFF 50K in Huntington, IN. I had finished the race in 2004, but by the end of 2005, my body was just tired. My ITBs flared in both legs and with a foot of snow on the trails, 19 degree temperatures, and a 30 minute late start because I overslept, I was miserable, hurting, and behind the cut-offs after the first loop of the three loop course. Because I could not even complete the 2nd loop before I would have gotten pulled at the next aid station, I was coaxed into dropping from the race. I went to the car and cried. If you noticed, crying is a common emotional response for me, whether happy or sad, lol. I was on a schedule, so when I started having the ITB problems in the weeks prior to HUFF, I continued to run. I finished the Holualoa Tucson Marathon in Arizona (the race director was the elite ultrarunner, Pam Reed, who came and talked with us on the bus that took us from the finish line to the start line) in my slowest marathon time up to that point, 6:08:54. The next weekend was even worse, dragging the left leg for the last 16 miles because I was in so much ITB pain and finishing the Kiawah Island Marathon in South Carolina in 7:13:42. So, when I got to HUFF the following weekend, my body threw in the towel.

That year was also the year that I did 4 doubles, Saturday and Sunday races. The Mad City Marathon in Madison, WI and Lakeshore Marathon in Chicago, IL was the first double. I finished Mad City in 4:38:37 and then Lakeshore in 5:51:17, because the last few miles of the Lakeshore course were not marked well. A first time marathoner and I ran off-course right into downtown Chicago before we found our way back to the course. It turns out that there were also two 25 mile markers on the course. Part of the problem was that the race director had moved the start line the morning of the race and had not compensated for the extra distance on the remainder of the course. There really is no telling how much over the marathon distance we ran that day. Needless to say, there was so much uproar from runners on http://www.marathonguide.com/ in the comments section for this race that the 2005 edition was the last Lakeshore Marathon.

The second double was Marathon to Marathon in Storm Lake, IA and Swan Lake Marathon in Viborg, SD. I was told at the Swan Lake Marathon that I was seen on the news coverage of Marathon to Marathon because I was running in the vicinity of the Governors of Arkansas and Iowa, who were also in the race. I didn't even remember any news cameras on the course, not to mention that I was running the same pace as the Governors, lol. I had missed the news coverage because I had driven to Viborg after the race and probably went straight to bed after dinner and a shower.

The third double was the New Hamsphire Marathon in Bristol, NH and the Maine Marathon in Portland, ME. I finished the New Hampshire Marathon on Saturday in 4:58:51, and the Maine Marathon on Sunday in 5:01:51, my closest finishing times for a double.

The last double of 2005 was the Breakers Marathon in Newport, RI and Mystic Places Marathon in East Lyme, CT. I hated the old Rhode Island course and started the race late because I couldn't find the start line. My finish time with the late start was 5:20:08. In contrast, I absolutely loved the course for the Mystic Places Marathon and had a negative split for the weekend with a 4:34:36 finishing time.

I took a couple of weeks off from running at the end of 2005, hoping that my ITB problems would clear up. On January 8, 2006, I was scheduled to run the OC Marathon in Newport Beach, CA. It was my 38th birthday, and I was to finish the 50 states circuit at that marathon. I really didn't believe that I would be able to run a step, but with the help of my running buddy, Charlie (CA), I was able to finish in 5:17:15 with very little pain. That was my sign to register for more races. I ran 52 marathons/ultramarathons in 2006, the most races that I've run in a year. I did my first 50K double in December of that year: HUFF 50K in Huntington, IN in 8:03:12 and Recover from the Holidays 50K in Huntsville, AL in 8:09:49. I also ran my worse double by time in December: Rocket City Marathon in Huntsville, AL in 4:51:51 and the next day, Otter Creek Trail Marathon in 7:22:51. In August of 2006, I ran my 100th marathon/ultramarathon at the Silver State Marathon in Reno, NV, where I learned that running through sand was hard and no fun at all. I crossed the finish line with my running buddy, Albert (CA), who was also finishing his 100th marathon/ultramarathon. This year would also yield some age group trophies for me. In the France to Germany Marathon in French Lick, IN, I won second place in my age group with a time of 4:46:41 and in the Andrew Jackson Marathon in Jackson, TN, I won third place in my age group with a time of 4:41:24.

Although 2006 was a great year of running, the first half of 2007 was my best running. I completed 48 marathons/ultramarathons that year. I finished my first 100 mile race at Rocky Raccoon 100 Mile in Huntsville, TX in 28:22:08. I had my best Rattlesnake 50K finish time in 8:01:26, a race that I've finished six times. I also ran my marathon PR at the Andrew Jackson Marathon in Jackson, TN in 4:20:02, taking home the second place trophy for my age group. In the second half of 2007, I was hampered with back and hip pain that I thought was from running too much and too often. I went to a chiropractor for three months (and later a physical therapist for a few weeks), decreased my running during the week, and continued running my scheduled races on the weekends. It wasn't until January of 2008, when my hip and back pains increasingly became worse that I found out that the pain was actually my breast cancer returning, but this time the cancer was in my bones.

In 2008, I still ran a lot of races (completing 45 marathons/ultramarathons) but at a much slower pace. With the pain, I just couldn't train like I had become accustomed, and I was gaining weight because of it. It was all I could do to make it to the start line. That year, I ran my first 100K at the Bandera 100K in Bandera, TX, one of the hardest courses that I have run because of the rocks and ascending/descending of mountains. The race director gives you 24 hours to finish, and I finished in 21:21:35. I also returned to the Rocky Raccoon 100 Mile, finishing in 29:28:07, an hour slower than the previous year. This was the year that I began running a lot of timed events, completing my first 24-hour race at 24 Hours Around the Lake in Wakefield, MA with 69.52 miles. The race was on concrete, and the balls of my feet had never been so sore after a race. Also, #200 occurred in 2008 at the 12-Hour Adventure Trail Run in Triangle, VA, completing 39 miles. My second 100k was at the Wild West 100k in Lowell, MI. There were only 3 females in the 100K. My running buddy, Terri (SC), and I stuck together for the whole race. She was 2nd overall female, and I was 3rd overall female. The overall awards were huge gold painted horseshoes with a star in the middle that I absolutely loved. I also managed to finish two more 100 milers that year, Heartland 100 Mile in Cassoday, KS and Mother Road 100 Mile in Elk City, OK.

In 2009, I started this Blog with the intention of having a place to talk about my running adventures. Unfortunately, it has slowly deteriorated into a "How to Live with Metastatic Breast Cancer" chronicle. This post is probably the most I've written about running in months. So, let's get back to that.

I finished 38 marathons/ultramarathons in 2009. I ran the Bandera 100K for a second time in 20:43:43. I also completed the Umstead 100 Mile after taking a 50 mile finish in 2008. My momma travelled with me to Hawaii for the Kona Marathon, her very first flight ever. I ran 80 miles at the Tour d'Esprit 24-Hour Run in Memphis, TN, promptly and literally passing out a few minutes after I sat down for the awards ceremony. I woke up surrounded by paramedics. Someone had removed my glasses, so I couldn't really see. Ice packs were being placed on my head and neck. Someone was lifting and propping up my legs. And a running buddy, Harry (MS), had to accept my award for me because all of these people would not get out of my personal space, lol. I had placed 2nd overall female. After I convinced the paramedics that I was fine and that I didn't need a trip to the hospital, I remember kicking myself later that day because the first place female had also run 80 miles, but she had run it in a faster time. I had time to run at least one more mile, if not two, which would have given me the overall female win. But I had a goal of 80 miles when I started the race, and when I reached it, I stopped with about 40 minutes left on the clock. The lesson learned here is that, in a timed event, you run until the clock stops, lol.

In 2010, I was becoming very discouraged from all of the pain in my back and hips, side effects from the various treatments, the weight gain, running less, racing poorly, and fighting cut-offs. I don't know how many DNFs and DNSs I had, but it was a lot. I managed to finish only 24 marathons/ultramarathons last year. I did complete the Philadelphia 100 Mile and Mother Road 100 Mile, bringing my 100 mile race total to seven. The month of June saw no race completions at all, while I had two weeks of radiation to finally give me a break from the pain. I finished several timed events last year, because they were less stressful for me. There are no cut-offs, and you just run what you can. I saw my first overall female finish ever at the Badgerland FX 24-Hour Run with a 24-hour PR of 80.5 miles. It's not my fault that only one other female was in the 24 hour! A win is a win, and that's coming from someone who isn't competitive at all, lol.

This year, I've already finished 23 marathons/ultramarathons, so I will have more completions this year than last year. As I perused my spread sheet, I remembered something about every single one of those 299 races. It just goes to show you that it truly is about the journey and not so much about the destination. And what a great journey it's been! I've been to places that I never would have seen if not for a race. I've overslept. I've run injured with ITB and achilles problems. I've missed planes. I've been bumped to later flights and left wondering if I'd make it to the start line in time for my race. I've gotten lost getting to races and leaving races. I've gotten lost on some race courses. I've fallen on the trails many times. I've seen bears and snakes, which are not my favorite things to meet on the trails. I've run with some wonderful people who have become great friends. I've done well in races and just as poorly in others. But no matter what, I am always thankful that I'm still out there.

I talk to God a couple of miles before I cross the finish line of my races. I thank Him for allowing me to do what I love to do. I thank Him for the volunteers, the race director, the safe travels, the food that nourished my body over the weekend, and the weather, whether it was cold, hot, rainy, snowy, or whatever. And I thank Him for the beautiful courses that I run on, roads or trails. There's always a pretty sight for my eyes and soul. I thank Him for a job that pays me well enough to do these races and that gives me free weekends to do them. I joke about quitting, but I don't think that I can. I don't know if and when I'll ever get back to being able to train like I should, so that my race times can improve. I get so frustrated from the cancer pain and the side effects from the treatments, but as long as I can run, walk, shuffle, or hobble in the races, with my running buddies, life is good. I love this sport. I really, really do. I hope that God allows me to see #400, #500, #600 . . . .

A list of all of my marathons/ultramarathons is on my Marathon Maniacs page:
http://www.marathonmaniacsdb.com/Maniacs/MyMarathons.asp?ManiacId=245

A list of the Mega Finishers in the 50 States and DC Marathon Group is here:
http://www.50anddcmarathongroupusa.com/megadivision.cfm

A list of the Ultramarathon Finishers in the 50 States and DC Marathon Group is here:
http://www.50anddcmarathongroupusa.com/ultras.cfm

A list of the World Megamarathon Ranking (300+) is here:
http://www1.vecceed.ne.jp/~ageo/fullhyak/%82Q%82O%82P%82OYL%81@%20World%20Mega%20Ranking%20rev2.pdf

We Have the Same Name - 8/3/11

We have the same name. We both wear prescription eye glasses. We are about the same height and complexion. When I was bald, she was losing her hair. Now that I have hair, she has none. I had a mastectomy. She had a double mastectomy. Cancer was only found in one breast, but she had the other breast removed as a precautionary measure. She has a family history of breast cancer. I do not. I'm only three years older than she is. She has two kids, ages 5 and 13. I have none.

Her oldest child understands that she is sick. He tells her often that he loves her, and she happily returns the sentiment. "He told me that his love for me is as big as the sun," she proudly said.

I laughed. "That's a lot of love," I told her.

"I told him," she continued, "that I loved him as much as I love God." She has a lot of faith. "I believe that it is all going to work out," she said. "I'm not giving up my faith. I pray every day." She made me a believer. I told her that prayer does help, and she nodded enthusiastically.

Her breast cancer was discovered when she was pregnant with her youngest child. She prays for another six years to see her oldest become an adult and her youngest become old enough to understand what is going on with his mother.

She has metastatic breast cancer to the bones, liver, and lung. So do I. We see the same oncologist in a cancer treatment center with several oncologists. We often are in the treatment room together, although we've never had the opportunity to sit next to one another and talk. Since we have the same name, a few months ago, one of the nurses joked about getting us mixed up. I threatened to sit next to my MBC sister and really confuse her. The nurse laughed and agreed that would really throw her off.

Our treatment protocols are different. I ran down my list of treatments since my second diagnosis in 2008. She, on the other hand, could only recall having Tamoxifen, one of the drugs I was also given initially. "I got 2.5 years out of that drug," she said. I barely got a year.

She had radiation to her hip. Her pain is better, but she has been having bowel troubles ever since then. Her stomach is visibly puffy. I also had radiation last year to my left hip. The pain is much better, and I am having no residual side effects. I'm beginning to see that even with the same disease, we are having much different experiences.

"I would feel so much better if we could get my bowel problems under control." I asked if there wasn't something they could prescribe to make it better. "Stool softeners," she said. They are treating the symptom, not the problem, and she is miserable. Although I had bowel problems from the chemotherapy for the primary breast cancer in 2003, I have had no bowel problems since I started treatments for my metastatic diagnosis. I feel sorry for her.

She is hooked up to an oxygen tank. I am so grateful to still be able to huff and puff our pollution-filled natural air. Sure, I complain when I can't get enough air into the lungs, and I get dizzy from lack of oxygen, but I can still breathe on my own. She can not. How in the world would I pull the oxygen tank over some of the hilly, rocky, and rooty trails that I run on? She can't run. I'm guessing that she can barely walk. I would die if I could not run/walk/shuffle along on the trails and roads. Again, my heart is breaking for her. How is she mentally handling all of this?

I am called back to the lab for vitals, blood work, and a urine sample. Both of us had scans this morning, so we'll see the oncologist for the results, and then proceed to the treatment room for chemotherapy.

My oncologist tells me that my scans from this morning look good. The liver and lung tumors are stable. My blood work and urine are good. My oncologist gives me another prescription for antibiotics because the nails are now oozing and smelly. Other than that, we will continue with my treatments. I am blessed to be in a state of stability. I realize that my situation could be a lot worse.

Unfortunately, the treatment room is overcrowded as usual. When my MBC sister comes into the treatment room later, she finds one open seat on the other side of the room. I have so many more questions for her. I guess I'll have to wait to talk with her again. I only get my 30 minutes of Avastin today, but she is there much longer than me. I leave with heavy thoughts about the sister with the same name as mine.

Make her feel better. Solve her bowel problems. Shrink her puffy stomach. Answer her prayers and give her another six years with her kids. While I'm asking, give her another 60 years. Let her see both kids become adults. Let her see the grand babies that will hopefully come sooner rather than later. Take away her cancer. Give her beautiful hair. Take away her oxygen tank and allow her to fill her lungs naturally. Let her walk effortlessly. And if she so desires, let her run on the trails and the roads, exploring the beautiful scenery around her. Let her live.

Green Thumb - 7/6/11

My oncologist is not happy about my green thumb. She says that she has never seen the nails turn green. Sure, Taxol does a number on the fingers and toes and causes neuropathy, but my situation is so serious that she makes the hard decision to take me off of the Taxol. To be clear, the whole thumb is not green. The nail and the skin closest to the nail are lime green. The thumb is very sensitive to the touch and is swollen. My other nails are undergoing the same fate. They are all in some shade of brown, indicating the nails are dying and starting to separate from the nail bed. All of my fingers and toes are neuropathic - tingling, painful, or numb. I had long ago cut down the nails as close to the skin as possible to lessen the pressure on the nail beds, but it appears that this action has done little good. Because of the chemo, the nails aren't growing as fast as they would normally, which is a blessing.

I have mixed feelings about stopping the Taxol. My last CT scan showed continued regression in one of my liver tumors. It's down to 10 millimeters from 16 millimeters. Initially, it was 19 millimeters, so that sucker is really shrinking. The lung tumors are stable, and there doesn't appear to be any new bone lesions. That means that seven months of chemotherapy is working. I really don't want to stop just because of neuropathy. I've been in so much pain from the mets in my spine and hips in the past four years that the pain in the fingers and toes is minimal in comparison. I do drop things because of the numbness, and I need to go shopping for pants with no buttons. Anything that touches the fingers and toes causes pain, or in the case of the numb digits, a tingling sensation travels through the nerves. And the green thumb is really grotesque. Even with all of that, I would still rather be on the Taxol. What if the tumors start spreading or growing again? Technically, Taxol has not failed me yet, so as soon as the neuropathy is under control, maybe I could go back on it. In the mean time, however, my treatment options are so limited that my oncologist offered no replacement for the Taxol.

I'll still get all of the other drugs: Avastin (chemotherapy drug that enhances the effects of Taxol by cutting off the blood supply to tumors); the clinical trial drug, Everolimus (I still think that I'm getting the placebo); Zometa (helps to build new bone tissue); Lupron (injections to keep the ovaries shut down); and Aranesp (injections to help build up the red blood cells). Without Taxol, I no longer need the IV bags of steroids and Benadryl. Eliminating the steroids should allow me to finally calm down enough to get some quality sleep during the night. Of all of the drugs, Taxol is the most important, and as proven from the neuropathy, the most toxic. Because of the green thumb, I'm back on more antibiotics. My oncologist also wants me to soak the nails in warm water and baking soda several times a day. I'll lose the nail on the thumb, but maybe by stopping the Taxol, starting the antibiotics, and soaking the nails, I'll be able to save the others. The real reason for stopping the Taxol, of course, is to save the nerves. Having permanent nerve damage in the hands and feet would really suck.

Avastin is still spiking my blood pressure. I am now on a double dose of the blood pressure medication. By eliminating Taxol, my blood counts should start coming back up so that I'll be less tired and breathing better, and the eyebrows and eyelashes should finally start to grow back. Avastin is used as maintenance and doesn't really attack the tumors like Taxol. The best we can hope for is stability with no progression. Regression is almost impossible without the Taxol. The best thing about all of this is that I now only have to go to the cancer treatment center twice a month instead of three times a month.

As a side note, I'm down to essentially no running. I just can't get enough oxygen into the lungs to sustain a run. Trying to breathe in too much oxygen too fast only results in dizziness. My stamina is gone. I could literally fall asleep while I'm walking. A power walk is a struggle, but I've been moving my legs every day. I hesitate to say walking because three miles an hour is really pushing it for me. I'm hoping that working this hard has some kind of training effect. Maybe when I'm able to get back to running, it won't be too difficult to get back into shape. Regardless, I do what I can, and I try not to stress about what I can't do. I am still "racing", but it's all for sanity reasons now. I'm sick and tired of being sick and tired, so I need some type of normalcy in life. Racing does that for me. I am so grateful to all of the race directors who put on timed events or who have very, very generous cut-off times for the distance events that allow me to finish.

I've also tried to decrease my calorie intake, losing about five pounds over the last couple of months. I'm not running, so I really should have made adjustments some time ago. Hopefully, I'll be able to shed a few more pounds throughout the summer. I have several cute little sundresses that I would love to squeeze back into. My face had become so bloated from the steroids, so when a good friend of mine recently commented that my face was thinning out some, she really made my day. It's the little things in life that are so special.

You Don't Look Tired - 5/10/11

"Did you have treatment today?"

"Yes," I responded without going into details. Because I arrived at my office in the late afternoon on a Tuesday, my co-worker should have known the answer to the question before it left her lips. I have had chemotherapy three out of four Tuesdays a month for the past six months. The routine has not changed. She knows this, and she still asked the question. We were about to embark on another one of our cancer discussions.

"So, when do you get tired?"

I almost didn't answer the question, but then I gave her the benefit of the doubt. Maybe she was just curious. Maybe she was concerned. I don't mind answering questions of curiosity or concern. I would rather people ask me about metastatic breast cancer than for them to assume something about the disease that is incorrect. With breast cancer as prevalent as it is, women and men should gather as much information as they can about the disease. I won't force it down anyone's throat. I rarely bring up cancer in daily conversations, unless I'm asked. It's like with running. I won't initiate the topic, but if asked, I'll talk about it until the person's eyes glaze over. However, with this person, I know that it's not about curiosity or concern. I was going to let it slide one more time.

"I'm always tired," I answered. It was short, stated nicely, and to the point.

"You don't look tired," she said simply.

At that moment, I wanted her out of my office. I stared and typed at my computer, hoping she would say what she had to say, get the blunt message that this conversation was over, and then leave my cubicle. I'm sure she didn't mean to be insensitive, but I think she was trying to get a more detailed explanation out of me, and I was not in the mood today.

She's done this to me before. In 2003, the chemotherapy "cocktail" that I was on made me very ill. I was nauseous mostly all day and every day for three months before my mastectomy and then three months following my mastectomy. My stubbornness would not allow me to vomit. I learned early on that slipping in very small meals throughout the day when I wasn't feeling too badly helped me a lot. Those rare moments when I thought my body would not rebel were the best times to sneak in some Sprite, a cracker, or some tomato soup.

In 2003, the conversation went similarly to the one above:

"When do you get sick?"

"I'm always sick."

"You don't look sick."

I mean, how am I suppose to respond to that? Maybe she thinks she's complimenting me in an off-handed manner. Maybe her statement is synonymous with, "but you look good," which is what I normally get from other people. Or maybe I was reading her wrong. Maybe I was being overly sensitive.

She is the type of person who comes to work when she doesn't feel well and proceeds to tell everybody in the office what is wrong with her on that particular day. She's had so many illnesses since she's worked in my office that I'm surprised she hasn't keeled over by now. Don't get me wrong. I don't wish her any ill will. I know that she does it for attention. I even play into her little game. The game gets old, but I won't say to her what she says to me. She really does look sick, hobbling when she's had a foot problem, a back problem, or a shoulder problem. Her eyes look tired and sad when she has a headache or her allergies are bothering her. But just because I don't profess to the office my health condition on a daily basis like she does, doesn't mean that I'm not ill or that I'm not tired. When asked, "how are you," I will not go into a long dissertation about how I'm feeling. I have to be caught off-guard, in a talkative mood, and with a person that I trust before I do that. I will only do that with a true friend or family member who I know really cares and is concerned. Someone who is just asking so that they can compare illnesses will not get the same answer.

I don't want to burden my friends and family every day with what's going on. Metastatic breast cancer is a chronic illness, just like, for example, diabetes. On a daily basis, a diabetic deals with blood sugar levels, what to eat, what not to eat, when to eat, when to take insulin, when to exercise, etc. I'm sure he or she doesn't work diabetes into every conversation and with every person that is encountered every day. There are a couple of diabetics in my office, and although I will ask how they are feeling occasionally, I have never said to them, "wow, you sure don't act like your blood sugar level is through the roof." Wouldn't THAT be inappropriate?

Whether I want to believe it or not, whether I appear sick or not, or whether I look tired or not should not be the determining factor about my situation. I am sick, and I am tired. I accept it, and I go on, but I don't give in to it. I am not going to mope around like I lost my best friend. I'm going to come to work showered and dressed professionally. The thin hairs on my head are going to be brushed neatly. I'll wear cute earrings to try and detract from my bloated face (a side effect of the steroids). And when someone asks me, "how are you," my standard answer is: "I'm good. How are you today?"

In general, I believe that people are decent. They want everything to be well in your world. No one wants to hear about a co-worker, friend, or family member who is having a bad day, a bad month, or, bless their hearts, a bad year, especially if they are not in a position to do anything about it.

So, let's get back to my co-worker. Does she think that I'm lying about my health because I don't look sick to her and I don't seem tired to her? What is she really saying? Does she want me to look as bad on the outside as I feel on the inside? Is that validation and justification for her? Is it a case of her just not really knowing what to say to a cancer patient? Does she really mean, "despite everything that you are going through, you look very well?" I don't get it. It makes me angry, rustles my feathers, and rubs me the wrong way because I don't get good vibrations from her when she says these things.

Maybe the next time she asks the question, I'll go into great details about how I've been feeling for the last six months. I should tell her that the skin hurts to the touch when I lose hairs from my head, eyebrows, legs, arms, arm pits, pubic area, and crack of my ass. I should tell her that the fatigue is really causing some quality of life issues for me now. After I take a shower, I have to sit down on the toilet for a few minutes, to keep from passing out on the floor, because I feel like I've exhausted that last bit of energy from body. I should tell her that getting out of the bed in the morning is a process. I have to sit on the edge of the bed and wait for my body to adjust. I wake up tired. My legs are weak. I'm dizzy. I'm breathless. The mile walk from the parking lot to my office takes me about 20 minutes, and I'm huffing and puffing loudly and quickly the entire time because it's a gradual uphill journey. I have to go slowly, because otherwise, my legs feel like lead from lack of oxygen. I get dizzy from trying to take in too much oxygen at once.

Maybe I should explain to her that it's truly a miracle that I can continue to do my races. I should tell her how I struggle with the pain in my hips and back from the cancer, the nausea, the breathlessness, the dizziness, and the weakness in my legs that inevitably come during the races for hours and hours. I should tell her that I shouldn't be out there and that I have to take special care of myself so as not to burden the race director or other runners with my fatigue and sickness. I should add that, even though I am physically incapable of completing the races in a decent time, I'm mentally feeling really good about myself because, regardless of the setbacks, I'm still out there on a beautiful day (even if it's cold and rainy) and on a beautiful course (with the endless hills, stream crossings that wet my feet, and roots and rocks that hurt my neuropathic toes). I'm having fun with my wonderful running buddies and doing what I love to do. Maybe I should tell her that it empowers me and gives me hope, that I'm trying to be tough, and that I'm showing cancer who's the damn boss. Do you think she'd be interested in hearing those details?

Or maybe she wants to hear about the day after my races. I can finally sleep, because the energy is totally depleted. I can finally eat and drink because my stomach is growling and I am thirsty. I am incapable of doing anything besides sleeping, eating, and drinking, but I finished another race the day before and I'm totally ecstatic about that small accomplishment. I feel like I have a love hangover, and I can't wait until the next weekend to do it all over again. She doesn't run, so she would probably not really understand trashing a dilapidated body and feeling damn good about it afterwards.

Maybe I should tell her that my tongue feels numb, that I have no taste buds, and that the mouth sores are painful. I love spicy foods cooked with peppers, onions, garlic, herbs and spices, but it all irritates the mouth sores. Besides, I can't taste them, but it doesn't prevent the food from setting my mouth sores on fire. We should talk about not being able to get enough food in my body because my stomach feels full all the time, and yet, I can't seem to lose any weight. While we're at it, we should talk about the extra 30 pounds that I have been carrying around over the last four years, from not being able to run as much as I would like, and because I can only do what my back and hips allow me to do. Let's talk about my raw throat and raspy voice that occurs for 3 or 4 days after treatment or when I've been huffing and puffing for too long. How about I tell her it hurts to button my pants, to type on the computer, or to pick up a spoon or fork to put food into my mouth because of the neuropathy in my fingers? How about the toe nail that I lost and the pain I feel when my toes touch the top of my shoes? Hey, here's a good one - my bleeding nostrils. It is really grotesque in the mornings, tapers off during the day, and picks back up during the night. Blowing the blood clots out and then having a runny, bloody nose for the next few hours is really exciting. We could get into the constant coughing and resulting phlegm, but that's just as nasty. I do not dare leave home without tissues.

Let's talk about the debilitating headaches that I'm still having. The neurologist has ruled out cancer involvement, but I'm still having them. Let's talk about the hot flashes that I have every hour, all day long, since 2008. They are a side effect from every treatment that I've been on for the last three and half years. During the day, they're irritating to say the least, but at night, I wake up every hour, tossing the sheet and comforter, grabbing water from my bedside, and fanning myself until it goes away. Then I'm cold and wet, and I pull the covers over my naked body and sleep for another 55 minutes or so until the next hot flash occurs.

Let's talk about the steroids, that keep me wired, even though I'm tired. I can't focus for long periods of time, and even though I want and need quality sleep, I rarely get it. Let's talk about my high blood pressure, a side effect of the Avastin, one of my chemotherapy drugs, and the high blood pressure medication that I have to take that doesn't seem to be working. My low blood counts (red, white, and platelets) are worth a few minutes of discussion, thanks to the Taxol, another one of my chemotherapy drugs. Let's talk about the hip pain that I still have. Some times it's a dull roar and at other times it's screaming murder, but make no mistake about it, it's always there. Let's talk about the tracks in my right arm because my left arm can't be used for blood draws and contrast injections for the scans due to lymph node removals in 2003. Several veins in my right arm and hand have been blown. The veins are swollen, painful to the touch, and slow to heal. My arm is in multiple shades of black and blue.

I really don't want to complain, but since I'm telling her all of this, I may as well tell her about my mental state. It's really hard dealing with all the little problems from the cancer and the treatments. Some days I don't know if I'm coming or going, because so many things are going wrong at the same time. How can I issue a technically sound permit to my facilities if the tips of my fingers are hurting from typing the permit conditions on the computer, while a hot flash is occurring, sitting in a pool of sweat, and then five minutes later, I'm shivering from the cold, and then I unconsciously swallow and the back of my throat throbs from the pain, or my tooth accidentally touches one of the sores on my tongue? When I get up from my desk after working for more than a few minutes to go to the printer to retrieve a document, I have to slowly stand up and stretch the hip a little before I walk away because the pain is begging for attention. But before I walk away from my desk, I feel a stream of blood running from my left nostril, so I grab a tissue to blow, and out comes a couple of blood clots. The once white tissue is now completely soaked with bright red blood.

It's close to lunch time, but my stomach is not growling from hunger pangs. It's still full from the orange juice or green tea that I had for breakfast, even though I know that's not enough to sustain me until dinner. And then what should I have for lunch? It doesn't matter. Nothing I eat has flavor to it, and after a few bites of food, I have to push it aside until my stomach opens up some room for the remainder of the meal or until the mouth sores stop hurting. And I'm tired. I want a nap so badly, I want to cry. But, even if I laid my head on my desk for a few minutes, it will be time for another hot flash, which will wake me up.

I may not look sick and I may not look tired, but there's enough going on in my body that I know that I'm not a well person. I don't want sympathy. Am I suppose to go through the day, disheveled, moping, cursing, placing the back of hand onto my forehead, walking around the office stating, "woe is me," hoping that someone will see me and ask me "what's wrong?" Should I proceed to waste 30 minutes of their day with bad news? That's not me. Sure, I'll tell it to the Blog all day. That's the purpose of the Blog, to listen without judgement. But I'm not going to burden and alienate my co-workers, friends, and family about how I'm feeling on a daily basis. Let's just assume that six months of chemotherapy is cumulatively tough on my body and leave it at that. When I say I'm tired or that I'm sick, regardless of how I look on the outside, my co-worker should not be flippant and say that I don't look sick and that I don't look tired. She has not earned the right to discredit how I feel. I should tell her that. I should ruin about 30 minutes of her day telling her how sick and tired I really am. But, you know what? This person has known about my Blog for years and will periodically ask about how to assess it, but I doubt that she's even read one post. That says to me that she is neither curious or concerned. What in the hell is she expecting from me?