Pat Down - 1/28/11

I have been flying to marathons and ultramarathons since 2004 on a regular basis, but this weekend was the first time that I have ever been pulled out of the screening line for a "pat down". This is truly an unpleasant experience, and later as I thought about it, it was also unnecessary. And it's not just because I know that I'm not a terrorist. It's because I still don't know what the process accomplished. The reason I was pulled for a "pat down" is because the airport that I fly out of has started using the new x-ray machines for screening. A few weeks ago when I flew to San Antonio, TX for the Bandera 50K, both airports were still using the old metal detectors. I have never set off any alarms when I walked through those machines, but the new x-ray machine picked up shadows in my upper torso.

When I stepped out of the machine, a TSA worker asked for my cap. I took it off, gave it to her, and watched as she ran her gloved hand along the inside band of the cap. She explained that she was making sure that there was nothing hidden in the band. I usually wear a cap when I'm going and coming from a race, and in all of these years, this was the first time I was asked to remove the cap to have it inspected. After she gave me the cap back, she told me to step to the side because they would have to do a "pat down". She asked if I had anything hidden under my clothes, because the machine had detected objects on my upper body. Without going into great detail, I told her that I have a port in the right side of my chest and that I have a prosthesis on the left side of my chest. She said that they would have to check this out. What???

Two other female TSA workers joined us and grabbed my duffle bag and the bin that contained my shoes, purse, and a small plastic baggie of toiletries. They led me into a small room and closed the door. One of them explained the "pat down" process, while the other one stood off to the side as an eye witness. As I stood with my legs spread shoulder width apart and my arms out to the side, parallel to the floor, with the palms facing upward, she moved her gloved hands all over my body, from my neck down to my ankles. I beg to differ with their definition of a "pat down". It's more of a rub down.

She started by running her hands along the inside collar of my shirt and then continued down my back. She examined both arms and then moved to the lower part of my body. She lifted up my shirt and ran her hands along the inside waist band of my pants. She then continued to "pat down" my butt and the back and sides of my thighs and calves. She also examined the inside of the thighs, touching, of course, the crotch. Unintentionally, I flinched just a little. By this point, I was totally shocked at the thoroughness of the "pat down". I'm glad I wasn't concealing a deadly weapon because she would have found it.

She then moved to the front of my body. She started again at the inside collar of my shirt, and then, she finally examined the area that had set the machine off in the first place. I stubbornly did not want them to know that I was bothered by the process, but my body betrayed me. I flinched again when she touched the port and the right side of my chest and then the prosthesis on the left side of my chest. The breast and the prosthesis were individually lifted as she ran her hands across the stomach area, which caused me to flinch a third time. My shirt was again lifted up, so that she could inspect the front waist band of the pants and then she continued to "pat down" the front of my legs. The whole process probably took less than five minutes, but I was just about mentally done when she finished. I felt like I had been molested, and if I wanted to get on the airplane and go to my race, I had better be quiet and let her feel me up. The least she could have done was offer to buy me dinner before hand.

Don't get me wrong. I don't blame the TSA workers at all. They were just doing their jobs, and I'm sure they didn't enjoy this part of their job either. For the most part, they were very professional. In return, I was nice and accommodating. And I'm all for homeland security. Do whatever you have to do to keep us all safe. But there has to be a point where you question the "pat down" policy.

When she had finished, she told me that I could put my shoes on, while she went to retrieve my driver's license and boarding pass. The other TSA worker stayed with me. I told her that I fly often and asked if there was a way to get a letter of some sort from my doctor or, alternatively, from the airport saying that I had been through this process before. I don't want to be subjected to the "pat down" every time I decide to board an airplane. She stated that it was not acceptable and that people with hip and knee replacements have medical cards explaining their condition and they were still pulled from the screening line when the old machines were used. She also stated that the new machines would no longer send up an alert for those with hip and knee replacements. I wish she would have stopped talking right there, because the next statement out of her mouth was just as puzzling as her explanation of why a medical card is unacceptable. She said that when I fly next time, make sure that I don't have anything external to my body that can be detected by the machine, because even tampons and sanitary napkins have set off the new machines. That's just wrong! I plainly stated that I don't have periods any more, so that won't be a problem. I guess I need to remove my prosthesis from my bra and then surgically remove the port from my chest and place them in the bin with my other belongings, so that I won't set off the new machines? There has to be a better way! Using a medical card and/or having something on file at the airport about a person's medical situation would eliminate the necessity of the "pat down".

My next point of contention is that if the machine revealed shadows in the upper torso, why in the world do they have to touch my inner thighs or any other areas that do not set off the machine? Am I being unreasonable? To me, although mentally uncomfortable, they should have checked the upper torso only. Heck, you can see the protrusion from my chest where the port is. You don't even have to touch it to know it's there. And if it's a weapon of some sort, I would have to cut myself open to use it. Furthermore, even if I can't feel it, why does the gloved hand of a stranger have to touch my prosthesis while it's on my body? I have no qualms about removing the prosthesis from my bra in a private room for them to examine.

And this brings me to my last point of contention with the "pat down" policy. If the port and prosthesis were the problems, why didn't they at least examine the prosthesis? How did they know that something wasn't embedded in the material by just touching it? So, why was I given a "pat down"? Touching only proved that there was a small device in the right side of my chest and a bigger device on the left side. The x-ray machine had already given them that information. Touching other parts of the body that did not send up an alarm proved that their x-ray machine was right again. So, why even waste time checking areas that don't show up on the x-ray machine? Do they not trust the x-ray machine?

I need to research the "pat down" policy. I admit I haven't read all of it. I made my flight into Phoenix, AZ for the Desert Classic Marathon. That airport is still using the old metal detectors, so I didn't have a "pat down" before boarding the airplane to return home on Saturday night. At some point in time, all of the airports will be using the new x-ray machines. Will I have to subject myself to the "pat down" every time I decide to board an airplane? That's crazy!

Bald . . . Again - 1/18/11

I am completely bald again. I really don't mind. Hair is over-rated for me. For over a year, I have sported a short Afro because I was so tired of fooling with my shoulder length hair. It had to be permed every 6-8 weeks, trimmed, and styled. If I wanted curls, I had to roll it every night, and then fuss with it the next morning. Most of the time, I combed it back and pulled it into a ball at the nape of my neck or left it dangling down in a pig tail. Even permed, my hair was never totally straight. After a run, it would almost revert back to it's natural state, lol. It takes up too much time to keep it up, and if I pay a beautician to do my hair for me, it's expensive. So in October of 2009, my sister cut it off for me. No more perms to deal with. Going natural is the way to go. A male friend trimmed my Afro close to my head about once a month to keep it neat. I loved getting up in the mornings, adding a moisturizer, brushing it, and just going.

I had only two chemotherapy treatments in December, but my hair started to shed. With the next two weeks off from chemotherapy, I thought that I would keep my hair this time. During that time, my mouth sores healed, my taste buds were awake again, my nails have not darkened any more, and the tingling sensations and slight pain at the tips of my fingers have ceased. Unfortunately, I'm probably going to lose the big toe nail on my right foot. The nail has turned brown and has started separating from the toe bed. That's okay, too. I've lost toe nails from running, so it's no big deal. The nose bleeds have finally stopped. I'm still pretty anemic (tired, breathing problems, and cold, unless I'm having a hot flash). There is never any relief from the hot flashes - every hour, all day, and every day. The hot flashes are a side effect of every treatment protocol that I've been on over the past three years. They are inconvenient, but they are just a part of my life.

The hair shedding was so gradual at first that it was hardly noticeable, but then it started collecting on my clothes. The bath tub was full of little hairs, as were the bathroom floor and sink, and clean up became a real chore. My scarf that I wrap around my head during the night would also collect hairs by the next morning. But my Afro was so short and thick, that in the mornings, I simply combed out the dead hairs and kept going. There were no visible bald spots. It was coming out pretty evenly. My scalp was a little tender, which is a clear sign that the hair was separating from the follicles, but I still didn't think I would lose much hair. I'm losing hair on other body parts as well: leg hair, nose hair, and pubic hair. My underarm hair has not grown back since I last shaved. I know, TMI! My thick eyebrows and eyelashes are fully intact so far, however. Hair loss during chemotherapy is a very strange (and random) process.

On Saturday, after washing my hair, I noticed that the bath tub had more hair than as of late. When I towel dried my hair, a large patch of hair was missing on the right side of my head, from my temple to about the middle of my head. It was completely smooth. The funny thing is that this was also the first bald spot that I had when I had chemotherapy in 2003. On Monday, I was able to just run my hand across my head and come away with a hand full of hair. It was time to ask my male friend to shave my head. As he cut away the hair, he also noticed several smaller bald spots at the top of my head. The remaining hairs clearly had to go. As the scalp was tender from the hair falling out, he carefully razored off the last of the remaining hair. Good riddance! I no longer have to worry about cleaning up all of the loose hairs all over my town house.

Thankfully, today my blood counts were just high enough to restart my chemotherapy treatments. The platelets are not clotting, and the lab could not run the kidney and liver tests that they needed, but we still proceeded. I've never had blood pressure problems, but the numbers were out the wazoo when they checked. We may have to deal with that at some point in the future. Most importantly, my oncologist decided that I should remain in the clinical trial. Apparently, my bald head has taken command of the situation, lol. We are back on track.

Happy New Year - 1/4/11

"Your blood counts are too low for treatment today."

I felt like someone had punched me in the stomach. The nurse proceeded to point out numbers highlighted on her papers. None of the numbers meant a thing to me, and I think I must have zoned out while she went through what my numbers should be and what they actually were. She left the treatment room to check with my oncologist and the research nurse to make sure that it was okay for me to leave for today. I was left totally stunned. Even on my worst days of chemotherapy in 2003, I never missed a treatment. My blood counts then were so low that I had to get shots of Aranesp to help my body produce red blood cells. This chemotherapy was considerably easier on me, and yet, it had already started causing problems that I had no control over.

For a brief minute, I went into panic mode. I've only had two chemotherapy treatments. Today would have been my third and then next week is a rest week with no treatment except for the oral chemotherapy pill (Everolimus or a placebo) that I take every day while I'm in the clinical trial. I'm convinced that I'm taking the placebo and not the real thing because I have not had the infamous rash on my face that everyone seems to get while taking Everolimus. However, I'm okay with that. Being a part of the clinical trial still opens up treatment options for me if something doesn't work down the road.

While I waited, I watched as two nurses tended to a patient who was receiving supplemental oxygen. She was so small and fragile. I wondered if she was strong enough to have her treatment today. Here I was looking as strong as an ox, and I wouldn't get my treatment today. I felt like the last kid standing on the playground who didn't get chosen for a team to play kickball with the other kids. I felt like a failure. I felt like I had done something wrong to bring the blood counts down.

The research nurse finally came into the treatment room and sat beside me. The white blood cell counts were her biggest concern. She gave me a prescription for a 7-day antibiotic. She asked how I was feeling. To be honest, I wasn't 100%, but I didn't feel bad enough that I shouldn't have treatment. I told her that I had what I thought was a cold last week, and by Friday, I had lost my voice. Five days later and I still was barely able to make a sound. I had a cough that produced a lot of phlegm. She was really interested in the color of the phlegm and was not happy that it was green/yellow, as that indicated an infection. She asked if there was blood in the phlegm. There wasn't, but blood comes from my nose daily. She asked if I had a fever last week. I'm sure I did when the cold first started, but it had been before I lost my voice that I'd had a fever. My temperature was normal when it was checked this morning. The mouth sores have started, and already, I was unable to taste my food. The mouth sores burned, especially when I ate and drank. But I wasn't nauseous, so I considered myself lucky. I've continued to eat, but unfortunately, my stomach feels full all of the time, so I've been eating smaller meals. The tips of my fingers have started to bother me, too, especially if I accidentally hit them against anything with even slight pressure. The nails are a light purple. Another treatment would more than likely make them a little darker. My hair was shedding, but it was not coming out in clumps. Again, another treatment would probably produce some hair loss. Having chronic anemia for three years now, I was always tired, but I was not at the point of being fatigued from the chemotherapy. There's a big difference. Clearly, the Taxol and Avastin were doing their jobs. I didn't want to interrupt them.

The research nurse said that I should also discontinue the oral chemotherapy pill. When I return in two weeks to see my oncologist, I had to bring in the unused pills. If it was determined that I could continue with the clinical trial, I would be given a new set of pills. I thought that missing this week's treatment was just a break in the action to allow the blood counts to come back up and that, in two weeks, I would be back in the treatment room getting the Taxol and Avastin. It finally hit me that my current treatment protocol was under consideration for termination after only two weeks. I wanted to protest that I felt fine, that I had all of next week to get my blood counts back up, and that, given the chance, I could do this. But the decision to send me away was non-negotiable. It was obvious that my oncologist and the research nurse were not going to let me deteriorate to the point where they couldn't bring me back, even if I was willing and able. They would nip things in the bud as they happened. They were that good. I, on the other hand, was so unhappy. I never wanted my treatment as bad as I wanted it this morning. I needed to stay in the clinical trial as long as I could. I knew they understood that, but I wanted to remind them. I wanted to plead my case. Instead, I promised to call them if my temperature reached 100.5, promised to wash my hands often, and promised to stay away from children and anyone that even looked like they had a cold. I sadly gathered my purse, coat, and new book and magazine that I was looking forward to reading during what would have been my three hour chemotherapy session. The good thing was that I would get to my office earlier today. The bad thing was that all I could think about was that we had just given the cancer cells two free weeks to wreak havoc on my body.

Spinal Tap - 12/15/10

This week has been busy. By Friday, I was ready to pull out my little Afro, lol.

On Monday and after almost three months of trying to see a neurologist for my headaches, I was called in for an appointment. I had an appointment for the 27th of this month, but I was also on a waiting list to be moved up if there were any cancellations. The neurologist looked at my last MRI and determined that three things could be causing my headaches. It turns out that my oncologist was not so far off when she said that the images from my MRI appeared as if I had had a stroke. The neurologist said that there may be some vascular issues that are causing the headaches. The most unlikely case would be multiple sclerosis. I even ruled that possibility out, and I'm not a doctor. The most likely case is that the cancer is in the spinal fluid. He scheduled me for my first ever spinal tap (i.e., lumbar puncture) on Wednesday to either confirm or rule out this possibility. Next month, I'll have another MRI to see if there are any changes. In the mean time, since I've been rationing out the steroids, the neurologist will authorize my oncologist to prescribe more steroids until we figure out what's causing the headaches. I'm not excited about taking the steroids, but they work. Metastatic breast cancer has taught me that just because I'm strong enough to deal with pain that I really should not if it's not necessary.

On Tuesday, I had another PET Scan. I'm not sure why my oncologist ordered another one so soon since my last one, unless they needed a base line before starting the chemotherapy next week. My poor veins in my one usable arm for injecting the radioactive dye are pretty swollen, bruised, and sore. I wish that they could use my port, but they can't, so there's no use griping about it, I suppose.

On Wednesday, I had the spinal tap. Like I always do, I did a lot of research on the procedure over the last couple of days. I was not comfortable with what I read - horrible back pain, inability to walk afterwards, terrible headaches, lying down flat for hours, and blood patches inserted a few days after the procedure due to complications. I am happy to say that my spinal tap resulted in none of these adverse side effects. There was very little pain, besides the initial prick of the needle for local anesthesia. There was some pressure in my spine when the fluid was being drawn, but even that wasn't too bad. Other than that, I just laid very still on my stomach with the right leg bent up and my face turned towards the wall. It took the radiologist all of 15-20 minutes to finish the procedure. The preparations prior to the procedure (answering questions and having my back scrubbed for sterilization) and the two-hour "recovery" (lying flat on my back with as little movement as possible) after the spinal tap were harder to deal with than the procedure. I'm still waiting for the results of the spinal tap.

On Thursday, I had an echocardiogram. The whole point of the test is to see if my heart is strong enough to handle the rigors of chemotherapy and to have a base line of my heart's function, since the chemotherapy drugs can cause congestive heart failure. Other than seeing snakes or bears on the trail during a run, it's a good thing that I don't scare easily. I'm hoping that my background in running mitigates any heart problems that may arise from the chemotherapy.

After the echocardiagram, I had an appointment with the research nurse for the clinical trial. Honestly, I think she could have told me what she needed to tell me over the telephone, but I know how my oncologist's office is. They like all of those warm and fuzzy, make you feel good interactions. I'm not going to complain. We had a nice chat and ended the conversation with the both of us anxious to get started on the new treatment. She is really optimistic about the chemotherapy getting my liver and lung back on track, so that we can then go back to working on the cancer in the bones.

I'm mentally exhausted. I hate missing time off from work, and I even missed my section's annual Christmas breakfast on Thursday morning at the Loveless Cafe. The biscuits there are wonderful - not that my hips need any biscuits, lol.

Over the last few days, I've been reading disturbing articles about Avastin, one of the chemotherapy drugs that I will be using. It appears that the FDA is revoking its approval of the drug for treatment of metastatic breast cancer because the success rate does not outweigh the side effects of the drug. That's my rough summary, and there are all kinds of details in regards to the revocation. I have a lot of questions for my oncologist before we start this treatment protocol. The articles indicated that those patients using Avastin would not suddenly be taken off the drug, but if the drug has been proven not to help, my question is why stay on it? And in my case, why even start taking it?

Okay. So, Friday finally arrives. My entire Division had its Christmas breakfast at Montgomery Bell State Park. This is a bigger deal than my section's breakfast, so I was glad that I was able to attend. I had biscuits, but they were not as good as the ones I would have had at Loveless Cafe, lol. After the breakfast, I left for my six-hour drive to Huntington, IN for the HUFF 50K. I was so ready to hit the trails and stretch out my legs for a long run. It was going to be cold, with highs in the low 20s. There had been snow all week, so the trails would be covered. But still, I was ready. I would look like the Michelin Man with all of my clothes to stay warm, but all I could think about was running for hours to clear my head.

It's been a couple of years since I've run HUFF. It's a relatively easy 10.5 mile loop (repeated three times), with a few miles of road for easy running to make up for any slow time on the trails. Besides a couple of ups and downs, it's pretty flat with very few roots and rocks. It turned out that the snow was hard-packed, so the footing was better than I thought it would be. I've been on this course when the snow was deeper and powdery, and the trail was a lot harder to run on. My ITBs didn't even scream that much because there was very little sliding. The right ITB hasn't been fully functional since the Equalizer 24-Hour in October, and the left one met the same fate during the Mother Road 100 Miler in November. Once my toes warmed up and since the ITBs were behaving, I was moving well, slowly as usual, but having a good day. So, it was with a heavy heart that I was pulled from the race after the second loop because I was over the cut-off to start the last loop. Well . . . isn't that just how the rest of my week had gone, lol? What was I expecting? Groan and sigh, lol.

Christmas is coming up. I still have presents to buy for the family. Other than trying to catch up on projects at work, that will be the focus for this upcoming week. I'll then spend the long holiday weekend with the family, which is always an enjoyable experience. Even though I start chemotherapy on Tuesday, this upcoming week will be a major improvement over this week. I'm sure of it.

Chemotherapy - 12/2/10

Nineteen days from now, I will start chemotherapy. Recent scans have revealed numerous tumors in my liver and my left lung. Other than my headaches, which have been temporarily controlled by steroids, I feel pretty good. The steroids have an added benefit of minimizing the pain in my back and hips, which has allowed me to do a lot of walking and running lately. I am so grateful for that. I have an appointment with a neurologist on the 27th of this month, so hopefully, we'll find out what's going on inside my head. I've been rationing out the steroids (one pill every two days, which is usually when the headache gets intolerable and starts radiating down the back of my neck and across my back and chest). There will be no refills after this bottle is complete, unless the neurologist prescribes them. My non-medical background guess is that the tumor on the left side of my skull is causing the problem, even though the MRI showed no metastases to the brain.

I have been on Faslodex for only two months, which is really not enough time to determine if that treatment protocol was working or not. Some times with hormonals, it takes a while before any signs of improvement are noticeable. The good thing is that if there are toxicity problems with the chemotherapy, I can come back to the Faslodex. I may need the extra ammunition in the arsenal in the near future. Faslodex is also one of the reasons that I have to wait to start the chemotherapy. There needs to be a waiting period of at least a month between different treatment protocols.

I am approved for a clinical trial of three chemotherapy drugs: Taxol, Avastin, and Everolimus. Since it's a "blind" trial, I may or may not receive Everolimus. Everolimus is a daily chemotherapy pill. The "trial" is to see if the Everolimus enhances the benefits of the Taxol/Avastin treatment protocol. If I don't receive the Everolimus, I'll get a placebo as a substitute. About half of the patients in the clinical trial receive the Everolimus, and the other half receive the placebo. I've already been told that if I develop a rash (usually first appearing on the face - ugh!) that I'm getting the real drug. Taxol and Avastin will be given once a week for three weeks through my port in the treatment room of the cancer center that I attend. Sessions will take 2-3 hours. The fourth week is a rest week. I'll be scanned every 2 months to monitor the progress of the treatment. If there is stability or regression, we continue until the toxicity of the chemotherapy requires us to stop the treatments. If there is progression, we are back to the drawing board. The bad thing about chemotherapy is that even though it's the most aggressive treatment protocol, because of the toxicity, you can't stay on it forever. My options afterwards are very limited if this treatment protocol doesn't work. However, the rapid progression in the liver and lung worries my oncologist. At this point, I have no physical symptoms that there is anything wrong with my liver or lung. I see this as a good thing. Chemotherapy will most likely do nothing for the cancer in the bones, but it should help the vital organs. I need those, so they have become priority.

The well-known and most common side effects with Taxol include neuropathy (tingling and numbness in the fingers and toes due to nerve damage, with a possible loss of the nails), heart and blood pressure problems, and protein in the urine. Avastin is associated with excessive bleeding (especially through the nose). Other side effects that are typical with most chemotherapy drugs are hair loss, diarrhea or constipation, mouth sores, nausea, vomiting, low blood cell counts, dizziness, fever, chills, infections, and fatigue. I am all too familiar with the side effects of chemotherapy from my initial breast cancer diagnosis in 2003. The only two side effects that I did not experience then was the vomiting and diarrhea. For every side effect, the oncologist will try to prescribe a drug to counteract it, but most of the time, the counteracting drugs make the situation worse, because they also have their own side effects. It was an endless cycle of misery. When I was on chemotherapy before, I had to get injections for the anemia. My blood counts were so low that my oncologist did not understand how I could still function. I was on steroids the night before I went to chemotherapy, the morning of chemotherapy and the evening following chemotherapy to keep the chemotherapy drugs from "attacking" the vital organs (especially the heart). There is a delicate balance between killing off cells and killing a vital organ. Chemotherapy is no joking matter.

My oncologist said that this chemotherapy will not be as bad as the one that I had in 2003. One of the three chemotherapy drugs I was on then was called the Red Devil (Doxorubicin), and it was so toxic that it was injected with a needle by a nurse into the port instead of through an IV into the port. The nurse had to sit with me, injecting it slowly for 30 minutes as she watched me for allergic reactions to it. The Red Devil was the prettiest and brightest red that I have ever seen. It always mesmerized me as it went into the line to my port, disappearing into my body and proceeding to kill every cell it came into contact with. At the time, there were days that I was sure the side effects from the drugs would kill me long before the cancer. But I survived it, and I am prepared to survive this round of chemotherapy as well.

Yesterday, I was quite contemplative. I wasn't sad or angry. My oncologist and I had discussed this probability before, so I knew it was coming. Not only did the scans show progression, but my tumor markers (measured by blood tests) were steadily moving up, with the last test showing 30 points higher than before in less than a month. Because I had been feeling better, I had been making plans for more races in 2011 than I had this year. With more running/walking, I think I can get my marathon times back under 6 hours and my 50K times back under 10 hours. This will open up more races for me. I had necessarily stopped registering for some races this year because I knew I couldn't make the cut-offs. With January and February completely booked with races (registration fees and plane tickets paid), I'm wondering if I'll be able to go to my races. I wasn't able to race at all during the 6 months of chemotherapy in 2003. My training consisted of walking for a mile or two on the days that I felt okay. More mileage than that and I would get dizzy and had to end my workout for that day. On most days, it was a major accomplishment to just get out of bed and to take a shower without becoming totally exhausted. Working all day would leave me little energy for anything else. Because of the nausea and the lack of taste buds, I wasn't able to eat properly. I would have never guessed you could survive on tomato soup, crackers, Sprite, and an occasional ice cold piece of apple pie. Through trial and error, that type of food seemed to settle my stomach. I lost 25 pounds during chemotherapy. It was the best diet I had ever been on.

I do wonder what will happen this time around. My nails turned purple and black last time, but I didn't lose them. And I never had the tingling and numbness in my fingers and toes. I loss all of my body hair. I had mouth sores and bleeding from my gums, but I did not have nose bleeds. The anemia was bad. The dizziness, fatigue, nausea, breathing problems, chills, and fever were rough. Still, the possible side effects from this treatment protocol appear worse than those from 2003. Neuropathy, bleeding from the nose, a rash (if I get the trial drug), high blood pressure, and congestive heart failure? Hair and nails do grow back. Are those other side effects reversible? I've read that some times the neuropathy is permanent. If I have a good response to the chemotherapy, how long will I hold off the toxicity to stay on it? Six months, one year, or two years? Everything is speculation at this point.

After this week of news, I'm looking forward to the Run Like the Wind 24-Hour in Austin, TX this weekend. The plan is to go out and have fun on a 0.6 mile loop. Next weekend is the Bartram Forest 100K or 100 Miler in Milledgeville, GA. I really haven't decided which distance I will attempt. If I don't push it too much this weekend, I may try for the 100 miler at Bartram Forest. There is a 32 hour cut-off, and I've heard that the trail is pretty runnable. The HUFF 50K in Huntington, IN is next. It's been a couple of years since I've done this race, but it's one of my favorites. The weather is unpredictable, but that's part of the fun. And then I'll end the year on New Year's Eve with the Freedom Park 24-Hour in Morganton, NC. I really enjoyed this race last year, even though my sprained ankle was not completely healed at the time. I am looking forward to improving on the 69 miles that I ran last year. It will be my first race after my first two sessions of chemotherapy.

Nineteen days from now, I will start chemotherapy. It's not the beginning or the end. It's just part of my life's journey. I will end 2010 on a good note, and I will begin 2011 on a better note. I have work to do. It's a tough job ahead, and I'm up for the challenge. My mind, body, and spirit are in agreement. I am at peace. I still have my faith. Tiger knows how to run. More importantly, Tiger knows how to fight. ROAR!!!

Faslodex - 10/20/10

"You are not getting any better." She could have said "you are getting worse," but I guess that's not exactly how an oncologist starts a conversation with her cancer patient. Neither statement softens the blow, although her approach was the kinder of the two. I wasn't surprised by what she said. I knew the circumstances even though I didn't know the details of the situation. I haven't been feeling better, and I mumbled something to that effect in response. She pulled up the rolling stool and sat down to face me. Now what? Today, with this headache, I was unprepared to handle any more bad news about my health.

She wondered why the Imaging Center did not do the CT scan that she had requested. I told her that my insurance company had sent me a letter stating that they would pay for the MRI and PET scans that my oncologist ordered but they would not pay for the CT scan. I will never understand why it's acceptable for an insurance company to make medical decisions. Since I began this ordeal in 2007, this was the first time I had been denied coverage. Realistically, I guess the insurance company isn't saying that you shouldn't have a specific test done. Just understand that they will not pay for it if you do. She said that she would take care of it. She needed the test to decide what to do about my liver, which showed progression on the PET scan. Without the CT scan, she wasn't sure if there were more liver tumors or if the one tumor that we've been watching had increased in size. She also needed that information to decide if I should start chemotherapy. Even though I knew there was a tumor in my liver, I had not been having any problems from it that I knew about. With more progression in the liver, chemotherapy may be inevitable. At the mention of chemotherapy, the pounding in my head seemed to become more intense. Chemotherapy had nearly knocked me out of this world in 2003. I began to wonder if I was strong enough to go through it again. Starting chemotherapy meant that I was running out of treatment options. I wanted to run out of the office. I wanted to hide. I wanted to scream. And I wanted to cry. I felt every ounce of energy drain from my body. My body. It was failing me. I have not been a saint, but I have tried to treat it right. Why was my body turning against me?

The MRI showed no cancer in the brain, but the constant headache that I've been having for four weeks indicated that something was wrong. I have no signs of having brain cancer (dizziness, nausea, and light sensitivity). We knew that there was definite progression on the left side of my skull. Last week when I came in for my monthly treatment of Zometa, my oncologist had given me an IV bag of steroids for the headache, since nothing in my arsenal of pain relievers was helping. She also gave me a step-down six-day pack of steroids in pill form to keep the inflammation under control until I had the MRI on yesterday. The images from the MRI showed that some type of trauma had occurred. There was a lot of inflammation. She said that the images resembled those of a person who has had a stroke. No, I have not fallen. No, I have not been hit on the head. And, forgive my ignorance, but wouldn't I have had signs that I've had a stroke??? She gave me a prescription for a two week supply of a different steroid, and the plan is to send me to a brain specialist for further evaluation.

Progression continues in my pelvic bone, especially on the right side. She asked if I was ready for radiation to that side, since the radiation on the left side that I received in June had been successful in reducing the pain. Since the tumor flare several weeks ago on the right side, I had been having tolerable pain. I wanted to save my radiation option for when I had unbearable pain, so I told her that I wanted to wait until we got to that point.

All this means is that the Aromasin was not working. Tamoxifen had failed. Femara had failed and now the Aromasin had failed. She would forgo trying the last of the aromatase inhibitors (Arimidex). My own research revealed that Faslodex was just as effective as Arimidex, but when it was administered as a fourth line of treatment, it's effectiveness was not very good (less than 20% of patients showed stability) because the body had developed a resistance to hormonals. Instead of taking a daily pill as I've been doing with the other drugs over the last three years, I would have two injections of Faslodex (one in the muscle of each butt cheek) once a month. We would continue the Zometa infusion once a month and the Lupron injection once every four months. So, I still had another treatment option, but I seemed to be going through my options rather quickly.

My oncologist also wanted me to sign a consent form to have samples from my cancer tissues (collected from my mastectomy in 2003 and biopsies in 2003 and 2008) analyzed for possible participation in upcoming clinical trials. She wanted to make sure that she wasn't missing a treatment protocol that would work for me. It will take about two months for the results to come back. I didn't hesitate to sign the 10 page consent form. I'm willing to try anything and everything. But, I have to say that I didn't even realize that they saved the cancer tissues. Upon reading the consent form, apparently, the samples can be saved for up to 15 years.

I'm having a "woe is me" day. I'm frustrated, angry, and sad. I'm trying to stay positive and trying to will my body to good health. I'm trying to keep my head up. But, it is taking a lot of energy to deal with the pain, to deal with the side effects of the medications, to work a full time job, and to just deal with life in general. I want to fight. I haven't given up. But, damn it, I need a freaking break! I'm tired. I want it to just go away. With the headaches, I have not been able to run to relieve the stress and to re-energize myself. Walking or any type of sudden movements makes the pain worse, but I can't just lie down all day. The steroids have me wired, and I can't sleep well, even though I'm exhausted. I have to work, and even my work is suffering because I can't seem to think straight for long periods of time. And I need my job. For whatever hoops the insurance company puts me through, I need the insurance to pay for my treatment. Plain and simple, treating metastatic breast cancer is expensive, and I'm not an independently, wealthy woman.

Lately, I've read a few articles about the expense of treating patients with terminal illnesses. The trend of thinking now is that if a patient has not improved after three different treatment protocols, then the doctor and patient should discuss end of life decisions (no treatment, hospice care, etc.) because it burdens the insurance companies. Also, those families with insufficient health care insurance are forced to spend their life savings to pay for treatment of a person who will die in a relatively very short period of time. Faslodex is my fourth treatment protocol, but I'm not ready to discuss end of life decisions. No thanks! My insurance company had better prepare to be sucked dry, because I will try every treatment protocol out there that I'm eligible for in order to find the solution that will eventually work for me. And when the insurance company kicks me to the curb, I'll sell everything I have to pay for the treatments. I'll be the patient on her death bed with a lap top computer still looking for one more treatment protocol to try.

I need to relax, and I can't seem to do that. If I can relax, maybe I can refocus my energy to manage this disease. I once thought that I would be in that rare group of metastatic breast cancer survivors who gets to experience NED (no evidence of disease), but lately I've been thinking that I may be in the majority group of those dying from this disease. Thoughts like that are not productive. I need to acknowledge the facts and then move on quickly. I seem to be lingering, however. I'm not afraid of dying. I'm just not ready to die. I love my life. And I want another 30 or 40 years to enjoy my life. I hate thinking about death. I hate thinking about cancer. I HATE CANCER!

Tumor Flare, Percocet, & DNS - 9/25/10

Last Saturday, I was in Wilmington, DE for the Delaware 100 Miler, a race that I had DNF'd last year. But I had so much fun last year and I felt that the course was doable, even for me, that I decided to go back this year. I only ran 40 miles of it last year. This year I made it to 68.5 miles. Given one more year, I probably could finally finish it, lol. But this may be the last year for this race. The race director, Carl, and his family are contemplating moving from Delaware to Tennessee. I teased Carl about starting another 100 miler in Tennessee, so that there was another choice besides the infamous Barkley 100 Miler.

For the most part, I felt good all day. My feet were sore, but I've finished plenty of races with sore feet, so that wasn't really the reason that I dropped out of the race. The real problem was that the last 10 miles took me over four hours to complete. I was so slow that I was on pace to finish in 34 hours, which meant I would have missed my plane on Sunday. Even though Carl said that he would give me an official time no matter when I finished, I didn't want to keep him and his family waiting for me so long after they had been so generous and kind to the runners by opening their home to us. I still had fun with old and new running buddies, and I don't regret the trip at all.

On Sunday, I flew back home, after a four hour delayed layover in Atlanta. The plane was late and then when it arrived, it had mechanical problems. I repositioned myself on my carry-on luggage and went back to sleep, while other passengers griped and moaned about having to wait for the plane to be fixed. Really . . . would you want to get on a plane that was experiencing mechanical problems, lol?

On Monday, I went to work. My feet were back to normal, and I had no muscle soreness whatsoever. This was proof that my training was getting me back to where I was supposed to be endurance-wise. Now all I had to do was to figure out how to get some speed back. I'll need that for the Heartland 100 Miler in a couple of weeks, where the cut-off is a strict 30 hours. I had one more long training run scheduled before then at the Hinson Lake 24-Hour in Rockingham, NC. I had no mileage goal. I just wanted a good long run with my running buddies. From the list of entrants and with almost 200 people registered for this race, it seemed like I knew about half of them. This was going to be a running party! Besides, I wanted to keep that good feeling going from my time spent in Delaware.

On Tuesday, I woke up with, literally, a pain in my butt. It was on the right side, but I figured it was probably some delayed muscle soreness from Delaware. I went to work. All day, the pain was getting progressively worse. And then I became nauseated. With 3 hours left on the clock, I ended my work day and told my manager that I would see her on Wednesday. I took some Advil, went home, and got into bed. I hadn't caught up on my sleep from the weekend, and I figured a little rest would do me some good.

By Wednesday, I could barely move. The pain was throbbing and intense. Each throb sent a shock through the rest of body, and it appeared that I was having spasms. This was not muscle pain. This felt like bone pain. Since radiation in June, I've had very little pain, so this incident was taking me by surprise. I began to dig out bottles of Hydrocodone and Oxycontin to go along with the Advil. I couldn't sit in a chair for more than 10 minutes before I was in horrible pain. Standing and walking seemed to make the pain worse. Previously, movement was the only thing that had eased the bone pain. Finding a comfortable position to lie down in bed was another worthless ordeal. I began to think that maybe one of the weakened bones in my pelvis had finally fractured.

On Thursday, I called my oncologist's office. The pain was intolerable. Other than the spasms, I couldn't move at all. I needed to see a doctor, and I needed to see one right now. Do I go to the oncologist's office? Do I go to my primary care physician? Or do I simply go to the emergency room? The advice from my oncologist's office was to go to the emergency room and to ask for pain relievers that were stronger than the ones I had. If it was the cancer, there wasn't anything that could be done any way. Getting a shower and putting on clothes was almost impossible, but I managed. It's amazing how the simple, every day things that we do and take for granted can become so complicated when pain prevents simple movement. Pulling up my pants and putting on a pair of shoes were comical. A friend of mine went with me to the emergency room. From the pain and the pain killers, I was not only nauseated but weak and dizzy from not being able to eat properly for two days.

In the hospital, I was given Percocet. What a wonderful drug! Within a half-hour, the throbbing had stopped and the pain was at a dull roar. I was so relieved. I answered seemingly inappropriate questions given the circumstances so that paper work could be filled out. No, I hadn't fallen. No, no one had hurt me. No, I hadn't hurt myself. I told the doctor and nurse that I thought it was my bone cancer that was causing the pain, but I wanted to make sure that nothing else was wrong because this is the first time that my pain level was a 10 on a scale of one to ten. They watched me try to move from one room to the next. The doctor poked and prodded and then ordered x-rays. My discharge papers read, "Your xrays show metastatic disease to your right sacrum and iliac bones" and recommended "Percocet-2 tablets every 6 hours as needed for pain". There were no fractures, so I was sent home to deal with the pain. What pain? The Percocet was working!

I had the prescription filled and went home to eat soup. It took forever to get it down since I was still nauseated. I spent the evening watching television and enjoyed having relative pain. Life was wonderful, until the Percocet wore off. Where was that bottle?

After an hour of no relief and the pain had increased to an unprecedented level, I wondered why the Percocet wasn't doing it's job. I looked at the bottle, and the pharmacy had substituted Oxycodone for the Percocet. I let out a stream of expletives that I won't repeat here. I took an Oxycontin, and an hour later I took Hydrocodone. At some point early Friday morning before the sun came up, I was able to finally dull the pain for a couple of hours of sleep.

Friday was another day in excruciating pain-land. I moved around as much as possible and took pain medication when I felt I couldn't handle it any more. The pain medication was all mental, because it did nothing to ease the pain, but at least my brain thought I was attempting to do something. Several times during the day, I just broke down and cried. Crying did not relieve the pain either, but I was so frustrated and hurt so much that the tears flowed before I could stop them. I had now missed several days of work, and I was going to be a DNS (did not start) at Hinson Lake. I was barely walking and in pain the whole time. I couldn't even sit at the computer or lay down on the couch in front of the television for very long. I tried reading in bed, but that lasted only so long before I was struggling to sit up to ease the throbbing pain and then struggling again to drag myself around the house. I was weak and dizzy because the nausea was also preventing me from eating. I was miserable, and there was nothing I could do about it but wait it out.

Saturday was a repeat of Friday. The only difference was that I was now so drug-induced that I could sleep a couple of hours throughout the day. To make matters worse, it was a beautiful day for a run. I hoped that my running buddies at Hinson Lake were having a great day.

Throughout this time, my one and only baby sister (by six years) has been keeping track of me. Bless her heart! She was really worried about me. She offered to come and help me, but I told her that was not necessary. She has to take care of my niece and four nephews. Besides, I felt like I was being a big baby about all of this, and I did not want her to feel sorry for me. Nothing was broken. It was just pain.

The one thing that my sister and I have in common is that we are realists. She asked the hard questions that no one dares to ask. I can appreciate that.

Have I ever been told how much time I have? No, I haven't. It varies for everyone. I have outlived the "average" time (24-36 months) of "expected" survival after metastatic breast cancer diagnosis, so every day is gravy. I know of one woman who has been in treatment for 20 years and is still going strong.

Why don't I quit my job and collect disability? It's not time yet. I want to live a "normal" life for as long as I can.

When it is time, will I come home and let my family take care of me? No, I don't want to be a burden to everyone. I'd rather pay for hospice care, but we'll discuss it if we get to that point. She hates that answer, but she doesn't argue.

Miraculously, on Sunday, the pain was dull but not throbbing. Throughout the day, the nausea went away, and I ate a decent meal. I was able to lay on the couch in front of the television and watch football all day. Since the pain was tolerable, I didn't take any pain medication. I could walk, although at this point it looked like a hobble. I had survived another tumor flare. In three years, this was the longest and harshest of them all. All of a sudden, things were looking up.

On Monday, I am back at work. I can sit for extended periods of time now. I can walk. It's such a simple process that babies can even do it, but I couldn't do it a few days ago. I missed walking. I savored my one mile walk from the parking lot to my office. The pain is dull and not throbbing. I am not taking any pain medication. This is what I am accustomed to dealing with. I was back in my element. Maybe I can go for a short run later this week. I'll definitely walk as far and as fast as I can over the next couple of weeks to get ready for Heartland. It does not look promising, but I'm going to try, darn it! The race and the flight are paid for, so why not? I'll get in some runs to loosen up the legs, and then I'll go to Cassoday, Kansas to do my best. I'll run a few steps with several running buddies before I'm left at the back of the pack, and I'll enjoy my alone time in the open prairie. Whether I finish or not, I'm looking forward to it.