Wednesday, December 15, 2010
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.
Thursday, December 2, 2010
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!!!
Wednesday, October 20, 2010
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!
Saturday, September 25, 2010
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.
Monday, July 19, 2010
I took a day off from work on Friday to drive to Hazelton, WV. It seemed like a life time since I ran a race. Vol State started on Thursday morning. I knew several of the runners that were running from the northwest corner of TN to the Southeast corner of TN, a distance of 314 miles. They had 10 days to complete the race, and they could do it solo (carrying everything they needed and using the stores and restaurants along the course for resupply) or have a crew driving along with them. This race was on my ever growing "to run" list. I debated whether to go out onto the course on Friday, Saturday, and Sunday or go to the Big Bear Lake 12-Hour Trail Race in WV. I decided to compromise. I would do Big Bear Lake on Saturday for my own mental sanity and then come back and go out onto the Vol State course on Sunday.
I need to race. I know that. I've been torturing myself by taking time off from doing just that. I'm more of a mental mess now than I was a few months ago when I made the decision. Time off did not do me any good. My body probably appreciates the change, but my mind has been in dismay. I ran 32.5 miles at Big Bear Lake, which is 5 loops of 6.5 miles. That was my goal, and it matched my mileage from 2008, the last time that I ran this race. Needless to say, I was happy. There is something to be said about muscle memory, because my performance had nothing to do with the "training" that I'd been doing over the last couple of weeks, lol. I really doubted that I would be able to get that much mileage in 12 hours, but there it is!
When I finished the race, I listened to my voice mail. Diane (TN) and Bruce (TN) had decided to drop from Vol State. She had horrible blisters, and Bruce did not want to go on without her. They were stranded in Huntingdon, TN, and if I was out on the course, they really could have used a ride to the finish, where their car was parked. I felt so bad, and I realized how selfish I had been. I thought that I had made the right decision to come to Big Bear Lake, when I could have been more useful out on the Vol State course. I immediately called her back. Luckily, someone came along and rescued them, and they were en route to the finish. I decided then and there that I needed to get back to TN, so that I could get out onto the Vol State course. Maybe I could help one of my other running buddies.
The only problem was that I was tired. It's a 9 hour drive to WV. On Friday while driving to WV, I could not stay awake. I would drive for a little while, pull off into a rest area and sleep for a little while, and then drive some more until I became sleepy again. It took almost 12 hours to get to the last rest area that was the closest to the race start. I took my last nap four hours before the start of the race. On the way back home after the race, I was in even worse shape, and it took over 12 hours to get back to TN. Drive, sleep, repeat. I was miserable.
So here I was, still tired, and looking out for Vol Staters. And then I saw him. He was standing under a large shade tree on the side of the road. He is tall and so very thin. His beautiful, flawless, dark skin showed tiredness from battling heat, hills, and humidity for four days. He had not shaved, probably since he started. His salt and pepper beard was the only thing that gave away his 62 years of being. He was crewless this year and wore a heavy pack with numerous pockets for fluids, food, clothing, lights, cell phone, maps, turn sheets, and anything else that he would need to get him to the finish. He had travelled on foot about 170 miles, over half-way to the finish, and was now in third place. He held first place for a while, until he mistakenly took a 6 mile detour and was passed by two other runners. He had been napping when he stopped to get something to eat but had not slept for any extended time during these four days. He was not eating very well. Being a vegan, he had very few food choices at the fast food places and restaurants along the way. And when I realized it was him, I blew the horn and found a place to turn around in the middle of the two lane highway. I parked in a gravel drive way leading onto expansive farm land. When he saw me, I thought he smiled just a little. Fred (OH), my running buddy for the past three years, was so very tired. Nothing that I had been through in the last three days compared to his last four days.
We hugged each other for a long time. The Delano Park 12-Hour in March was the last race we had run together. He had since completed several races including the Umstead 100 Miler, the Self-Transcendence 10-Day (505 miles), a 48-hour race (137 miles), Pineland Farms 50 Miler, and the Mohican 100 Miler. I will never be in his league, but he tolerates my hero-worship of his running abilities and, more importantly, of the wonderful person that he is.
I told him to sit in the car and get cooled off. But I had forgotten. He does not like the cold air, even in this heat. It cramps him up. So we sat with the doors open. I offered him cold water, Coke, Gatorade, chips, oranges, and oatmeal cream pies, even though I knew he couldn't have the cream pies. He took the water and Gatorade and filled a couple of his bottles. We talked about his experience so far. I tried to follow along, but now that he was sitting, he was falling asleep and not making much sense. Or maybe I was too brain dead to comprehend what he was saying. I told him to take his time, get cooled off, and rest just a little. He insisted that he didn't want to lie down, so he only closed his eyes and maybe napped for 10-15 minutes. I dozed, but I also watched the highway for other Vol Staters. No one was close to him.
He jerked. And then he was on the move. I reparked the car, so that it faced the highway, near some overgrown shrubbery. I locked the doors and grabbed a Gatorade, and we headed back out onto the highway. I would walk the next 10 miles with him. He couldn't run, because he had not had any sleep. If he had been running, I would not have been able to keep up with him. I doubted that I would be able to keep up with his walking. He commented that he had been slowly walking for hours now. That was all that he could do as tired as he was. He wanted to get to Columbia, have some good pasta, and sleep at the restaurant for 2 hours, before continuing on. I was determined to go with him. Since he was in the solo category, there was only so much I could do for him. I knew I couldn't "mule" for him. He had to carry his own supplies. The pack looked like it weighed as much as he did. I wanted to lift him and the pack onto my back and carry him into Columbia. I am built like a tank compared to Fred.
The highway had a narrow strip barely wide enough for us to walk side by side. When cars approached us, I ducked behind Fred, so that he wouldn't have to make any extra movements, using precious energy. This was a busy little highway, with the speed limit set at 55 mph. Everyone seemed to be going faster than that. The considerate drivers moved over and waved to us. Others looked like they were gunning for us and would just enjoy knocking us off the road. The hills rolled, and the sun beamed. A breeze would come along every now and then, and we would comment on how good it felt. There was no shade. There was farm land, houses scattered here and there, and many miles ahead. We talked about various things, and we fell silent more than once. What do you say to a person doing a monumental thing such as this? I was just in awe of the Vol Staters.
After 2-3 miles, we saw the race director, Gary. He and his daughter were driving the course checking on runners. I had not seen him since the Run Under the Stars 10-Hour Race in 2009. He asked if Fred was now being helped. I reassured him that Fred was still going solo. I doubt that he heard me, because a truck came barreling down the highway just at that moment. We stopped and talked a little, but if Fred was on his feet, he needed to be moving, so we continued on.
A little later, Fred started weaving in the strip. His hallucinations had been pretty vivid. A shrub turned into a dead animal with the legs up in the air. Another one looked like a large poodle. We saw a shady spot and crossed the street. We sat for a couple of minutes. I have been wanting to do this race for years as a solo, planning to push a baby jogger with my supplies. Now, seeing Fred and how tired but still determined that he was, I wasn't sure that I had a Vol State in me.
Before I knew it, he was up, and we were on the move again. We were coming into town now. We passed a sign that said 4 miles to downtown Columbia. Flo, Fred's wife, had crewed for him last year. He had dropped from the race once he arrived into Columbia. He had fallen behind on the schedule that he set for himself to finish the race in time to take his mother to a military ceremony honoring his deceased father in Texas. He wouldn't let his mother miss such an important event, so he dropped from the race. But this year, he was determined to finish. Beyond Columbia would be all new territory for him.
We spotted a laundromat. Fred said that he would check out the facilities, wash and dry some clothes, and take a nap. In the mean time, I would go back the five miles to get the car and bring it to the laundromat. It turned out to be the longest five miles of my life. I tried to run some of it and power walk as fast as I could, but I was drained. All I wanted was for someone to offer me a ride back to the car. No one did.
I finally made it to the car. It seemed to have taken longer to get there than it had taken for us to get to the laundromat. I grabbed a Coke, some water, and a bag of chips and drove back to the laundromat. I still saw no other Vol Staters behind Fred.
I was afraid that Fred would be gone by the time I got back, but he was still there. His clothes had just finished drying, and he was talking with a local about the race. He had not taken a nap. I reprimanded him like he was my child. Why didn't he sleep?
I gave him a Coke and a bag of chips. He reorganized his pack, grabbed his cell phone that had been recharging, and he was back onto the road. This time I would drive the car ahead into Columbia and then run back to him, walking with him back into town.
When I drove into Columbia, I saw Juli (IL). I had read the update on the UltraList about her severe sunburn. The description did not do her legs justice. Her legs were as red as a tomato. She now wore a long sleeve white shirt to protect what was left of her skin on her upper body. I immediately pulled off the road, parked, and walked back to her. I gave her a hug. Only afterwards did I think that I must have hurt her because of the sunburn. But she didn't complain. She asked how I was doing. My life is boring compared to hers right now. I wanted to hear about her experience. She rapidly told me that she had just finished a 2 hour nap, she had shared some time with Fred on the course, and that she hadn't been able to blog about the experience as much as she would have liked. "We've been kind of busy," she said. Well . . . yes, Juli, that's an under statement, lol. She said that she was enjoying herself. Severe sunburn, blisters on her feet, hills, heat, humidity, 314 miles of road running from start to finish, and she was enjoying herself. I had never done what she and the other Vol Staters were doing, but as I thought about what she said, I understood exactly what she meant. Maybe I did have it in me to do the Vol State one day.
Juli's husband, Val, has been crewing for her. He came running towards us to check up on her. I gave him a hug and told him to take good care of Juli, even though I already knew that he would. I hugged Juli again, trying to be conscious of the sunburn and not to grab her too tightly. As I drove off, I saw Val directing Juli to make a left turn onto Highway 50. There was a Shoney's at the corner and a hotel across the street from there. Gary had said that a couple of Vol Staters were planning to take a break at the hotel. For whatever reason, I parked the car there and ran/walked back to Fred.
About 3 miles later, I saw Fred. He said that a local had asked him to take a break and have a beer with him. Fred declined and opted to keep moving, lol. Don (TX) was hot on his tail. His crew person (I forgot his name), was just up ahead. When he took our photo, we joked with him that he was holding Fred up, so that Don could pass him, lol. Once we made it to Columbia's town square, Don did catch Fred. We all took another photo and chatted only a few minutes. At this point, however, Fred was not in jeopardy of losing his 3rd place position because Don was taking a break in the SUV with his crew person. Even though the Vol State is a race, runners know that they are not in competition with each other. They are competing against their minds, bodies, spirits, the hills, the miles, the heat, and the fatigue. It's irrelevant to be concerned about what another runner is doing because that runner is fighting the same demons. You just keep moving forward when you have to and stop only when there's a real need. Therefore, Fred and I made our way to Shoney's.
We had dinner at Shoney's, but the pasta that he ordered was not enough to fill him up. He couldn't eat the bread because of the butter, and for some reason, the rice that he had ordered was fixed with a creamy sauce (indicating a milk product), so he couldn't eat that either. Now we had to search for some additional food for him. There was also a Captain D's in the area. He was able to get fried okra and potatoes. He said that he'd been eating a lot of french fries and baked potatoes over the past four days and was growing tired of potatoes. To me, it still wasn't enough food for him, considering how far he had gone today, but he said that it would last him until he could have breakfast the next morning. Looking for more food had cut into his nap time, so he was going to take the food with him and continue on down the road. We had checked at the hotel for room rates, but it was more expensive than he wanted to pay for a few hours of sleep. He would just have to try and find some where else to sleep before the night was out.
I didn't want to leave him. I was in a rental car for my 3-day weekend, and it was due back at 11:00 p.m. It was about an hour's drive home for me, and I still had to go to work on Monday morning. I hugged him again. I told him to try to sleep and to be careful. He had his headlamp and a small handheld flashlight. He also had reflectors around his lower legs and on his pack. He took another bottle of water, and I watched him walk away from me in the night heading east on Highway 50. I was so sad. Had I done enough for my friend? Ten miles with him today was a drop in the bucket. He was now at about 180 miles into the race, and he still had so far to go. Knowing Fred, he would finish. I admire my friend. I want to be just like him when I grow up.
Go Vol Staters! Onward to the finish at Castle Rock, GA!
Friday, July 2, 2010
On Thursday, 6/24/10, I finished the last of 10 sessions of radiation treatments to my left hip in an effort to ease some of the pain that has been intensifying over the last few months. I'm happy to say I "graduated," as everyone in the radiation office says, with honors. I received several hugs and well wishes, and then I was asked to ring the hand bell (it's a tradition) before I left the office. Everyone who heard the ringing of the bell clapped for me. That was pretty cool!
I have a rather uncomfortable burn in the groin area, which has turned dark. The dead skin has started to peel away. At least my pantie lines no longer rub the area annoyingly raw any more. Also, because the radiation beams penetrate the hip area, my gastrointestinal tract seems to have been effected. Elimination has been difficult, but even that appears to be clearing up and returning to normal. Too much information, I know, lol. Other than that, I'm no worse for the wear. The good news is that the pain has eased up, and the radiologist says that over the next few weeks it will probably get even better. He also told me that, more than likely, I will not have to return to have that area radiated again. Of course, if there are new areas at a later date that start to give me problems, he can radiate those areas as well. Needless to say, I am a satisfied customer.
With the increased pain, I had really been neglecting my running. I had been pulled for time at the Another Dam 50K in Englewood, OH on 6/5/10. This is a race that I had finished easily in the past. Since then I had not run a step. I had been doing some short walks here and there for sanity reasons, but I was not training. I cancelled my trip to the Moonlight Boogie 50 Miler the weekend after AD50K, because I didn't feel like I could make the intermediate cut-off of 40 miles in 10 hours. I have become that slow. My walk is closer to 3 mph than 4 mph, and my running pace, if you want to call it that, is around 3.5-4 mph at my fastest. I have a lot of work to do.
I also withdrew my registration for the Viaduct Trail 100 Miler on 8/7/10. Even with a month of solid training, I would not be in shape to complete a 100 miles. I really wanted to go back and redeem myself from last year, but there is a long wait list to get into this race, so I wanted to withdraw early enough to give another runner a chance to get in and to make travel arrangements. I'm still planning to return to the Heartland 100 Miler in October and the Mother Road 100 Miler in November. Three months is not a lot of training, but I'm hoping that I still have some muscle memory going on in my legs. I'll have to scramble around for some marathons/ultramarathons in August and September to supplement my training, but I think I can pull this off.
It wasn't that I didn't want to run. I did. I truly did. It's just that the pain, the fatigue, the hot flashes, and the breathing issues were sucking out the fun of the run. Even some of my walks were labored, causing me to question why I was even trying. My issues had just been going on for far too long, wearing me down, and I was getting discouraged. But the radiation treatments have given me hope. My mind has been energized, and it is pushing my body to follow. With less pain, I can actually engage my hips on the run. I hadn't been able to do that since June of 2007, when I first noticed that the little aches and pains in my hips and back were getting worse. When I noticed that the radiation treatments were working, I decided that I would restart "running" on July 1, 2010.
My seasonal part-time job for this year ended on 6/29/10. Working two jobs is exhausting, even without the fatigue from the anemia. Needless to say, I've been a zombie for the last 3 months. But with only my regular full-time job now, I can get in the bed at a decent hour and feel a little better on a day-to-day basis. Over the next few weeks, I have committed to working some extra hours to try and complete some lingering projects, but that's still less hours a week than having a part-time job. The good thing is that by the time I leave my office, the temperature is bearable, and the traffic in the downtown area is tolerable.
It has been hot for weeks now, but yesterday was the coolest day of the summer with very little humidity. It was like Mother Nature was calling me back to the run, and I answered that call. I packed my running gear and took my duffel bag to the office with me. Our parking lots are about a mile from my office. Even though we have shuttle service, in the 14 years that I've worked my current job, I have taken the shuttle probably twice. If I drive to work, I always walk to and from the office. You'd be surprised how many people are standing in line for the shuttle, even when the weather is perfect for walking. Some days when I have extra time, I leave my Tiburon at home, and I walk to and from work, which according to Mapquest is only 4.93 miles each way. I'll be incorporating some of those walks into my training over the next several months.
I am woefully out of condition, so yesterday's run was a short four miler to judge how much damage has been done. No matter how slow, I wanted to sustain the run with no walk breaks. My downtown four miler starts with a mile around the Bicentennial Mall, a scenic park-like exhibit of Tennessee history. The Farmer's Market is next to the Mall, and the Capitol is across the street from the Mall. I have run up the many steps to the Capitol (picture me as Rocky, running up the steps of the Art Museum in Philadelphia), but today, I would take it easy and run the gradual hill around the Capitol. Well . . . this gradual hill is not easy when you're out of shape, lol. My heart was beating like it would explode from my chest, but I made it to the top without stopping. A red light held me at a stand still while I caught my breath. I remembered the days when a red light meant I would jog in place until it was my turn to go. Today, I would not push my luck, lol. I stood there and recuperated and then took off running again.
I turned left to climb the easier hill up to the YMCA and then turned right to run across the Church Street Bridge. I always watch the trains lined up on the tracks below the bridge. At the end of the bridge is the building for NES (Nashville Electric Service). A left turn from here heads toward West End Blvd. This is the first street that the Country Music Marathon runs along. I then pass the famous Union Station Hotel and the Bridgestone Arena, home of the Nashville Predators and where many concerts are held. I always enjoy this little stretch because it's basically down hill for almost a mile. I tried to push the pace a little here, but I was struggling with my leg turn-over. I was choppy at best, when I used to be as smooth as butter along this section. I'll get that back. I know I will. My hips were engaged, but just not at 100%, and the bouncing of my upper body was not as bad as it's been. I could tell that my hips were sharing the weight, because I wasn't leaning toward the side of least resistance. Damn, that radiation had done wonders for my hips!
I made a left turn to go pass the Convention Center and head up a long steep hill. It was dusk dark, and happy hour at the downtown bars, restaurants, and clubs was nearly over. It's always fun to see those a little too happy trying to climb this hill. I can't tell you how many times people have asked me how I could run up this hill when they could barely walk it. Today, it was a slow run, but I was definitely running up the hill. I was huffing, puffing, and sweating a little just to prove that I was working. And it felt good. It felt really good. I passed a group surrounding one guy sitting on the curb as they waited for the traffic light to change. I overheard his friends tell him that they were going to take him to the hotel as they pulled him to his feet. Too much happy hour, I thought, lol. Almost to the top and another group was waiting for their companion to catch his breath before going on, but I kept moving. I wanted to stop and catch my breath, too, but I would wait until the next traffic light, lol.
I turned right and ran right by my office building, the L&C Tower. With 31 floors, years ago, this was the tallest building in Nashville, but it has since lost its status and has been replaced by the AT&T (formerly BellSouth) building. Locals affectionately call it the "Bat Building". I am now running a slight one mile down hill back to my car in the parking lot, passing Music City Central, our relatively new dispatch area for the Metro Buses, and the Municipal Auditorium, where I've attended many, many concerts in the past. It has been a good run. I am tired. It has taken a solid hour to run my favorite four miler, but that's okay. I now have an idea of the amount of work that needs to be done. It's unpaid but fun work. And it looks like I'll be starting from scratch almost, but I have to do it. In the past, this four miler was an easy day (i.e., the day after a weekend marathon or ultra), and I've run this four miler in sub-40 minutes for years. That's not fast either, but right now, that's lightning speed for me. I'll get that back, too. It will take some time, but I'll run that easily again.
The Rattlesnake 50K, one of my favorites, is on July 10. I will not be ready for it, and I'm still on the fence about whether to go or not. The 10 climbs will kill me if I'm not prepared. I need to be able to run the down hills to make up time to be able to finish under the 10 hour cut-off. I've never been able to run the up hills in that race, but I have power-hiked those bad boys with a vengeance, something I can't do nine days from now. On July 17 is the Big Bear Lake 12-Hour. I'll definitely go to that race and put in as many miles as I can.
It's Friday, and the day before a long, holiday weekend. It's quiet in the office as a lot of my co-workers are making it a 4-day weekend. I'll work about 10 hours today, and hopefully get a lot of work done on a few projects, and then head out for another run. Maybe I'll do my 6 miler today, lol. That will incorporate the Schermerhorn, home of the Nashville Symphony, and the Walking Bridge to the Tennessee Titans' Stadium. It's another cool summer day today. Mother Nature wants me to join her. I can't wait.
Monday, June 14, 2010
The radiation office is in the building behind my oncologist's office and is in the basement. The first thing you notice is that there are no windows. And when I say it's in the basement, it's really buried. Even with lighting, it still seems to be dark and hidden away from the rest of the world. You take the elevator from the main entrance, go down a level, and then you follow the many, many directional signs to the radiation office. It's a maze. Without the signs, one would surely end up in another place and time.
The beautiful, shiny hardwood floor is my first memory. I instantly want that floor in my home, but I imagine that the upkeep would be a nightmare. The place had not changed since I'd been gone, but I'm pretty sure that the receptionist that greeted me was not the same one that was here seven years ago. She asked me several questions and then gave me several forms to fill out. In the mean time, every few minutes, radiation technicians came into the waiting room to get patients for their treatments. My second memory was that the wait was never long. A treatment session lasted less than five minutes. It took longer for a person to take off and put back on their clothes than it did to get the treatment.
It's Thursday and I will talk with my radiologist. We will set up a time to get my markings. Afterwards, I will start my treatments. The radiologist that had done my treatments before had retired and so I am assigned to another one. I am relieved. I don't have warm and fuzzy memories of him.
Four weeks into my radiation treatments for the breast cancer seven years ago, I developed blood clots in my left lung that kept me in the hospital for five days. I had never been hospitalized during the six months of chemotherapy that I had received, and I had only been in the hospital for three days when I had my mastectomy. Needless to say, I was not a happy camper that the least invasive and least toxic procedure had put a stop to everything. When the doctor told me that I had more than likely developed the clots from over-radiation, I was down right angry. When the blood clots were finally dissolved and I was released from the hospital, the first thing I did was go for a very long and very hard run to clear my mind. Next, I went to my office and researched blood clots from over-radiation. It was possible but rarely happened. There was about a 2% incident rate. Unfortunately, I was unlucky and had fallen into that 2%. I printed off papers and was ready to have an intelligent discussion with the radiologist on the following day, when I would resume the radiation treatments. I wanted and needed an explanation of why my radiation treatments had almost killed me.
On that ill-fated day, when the radiologist's assistant called me back to see the radiologist, she asked about my hospitalization. I had missed three treatments that week. While we were talking, the radiologist came into the room. His assistant said that I was the third patient of theirs that week who had developed clots. What??? The previous week the radiation machine had been recalibrated and . . . . She never finished her thoughts, because the radiologist interrupted her with a stern look. She had over-stepped her boundaries and had said too much. A blind person could see that. The doctor who had treated me for the clots had been correct. I had been over-radiated and two other patients had suffered the same consequences as I had.
We didn't discuss what the assistant had just blurted out. He asked me about my hospitalization and I told my story again, relating that the doctor who had treated me for the clots thought that I had been over-radiated. I handed my research papers to him. Instead of even glancing at the papers, he told me that I couldn't trust anything that I had found on the Internet. I protested and showed him citations from the British Medical Journal. He wouldn't even entertain the concept that I had blood clots from over-radiation. He had been doing this for 20 plus years and had never had one incidence of blood clots in his patients. He said that it was from the chemotherapy. But I had completed chemotherapy four weeks ago and prior to starting the radiation. He told me that blood clots were more common in males. I had one breast remaining, but I didn't think that qualified me as a male. He also told me that blood clots were more common in people that were overweight and immobile. Thanks to the successful "diet" of chemotherapy, I weighed 120 pounds at the time, and I was back to running every day. I didn't fall into those categories either. Every explanation that the radiologist threw at me, I rejected, and he was getting angrier with me by the minute. I was expecting an apology for taking away five days of my life, and I wanted a path forward to prevent this from happening again. Had that been too much to ask? He didn't apologize. Instead, I had been reprimanded. His path forward was to end the radiation treatments at five weeks instead of the initial six weeks that had been discussed previously. He jokingly brushed me off by stating that all I needed to do now was to find a left-handed boyfriend. His remark was cruel and insensitive. And it was the assistant's turn to give him a stern look. I couldn't believe that I had just been dismissed like I was a child. The intelligent discussion that I had hoped for had deteriorated to the painful reminder that I had one remaining breast on the right side of body. At the time, I had no rebuttal, and I quickly lost the little confidence I had to question my doctor about what was going on with my body under his care.
I tried to shake off that horrible memory. When the radiologist's assistant called me from the waiting room, she remembered me immediately. I remembered her, too. She had been the only voice of reason in that awkward situation. If it had not been for her honesty, I would not have understood what had happened to me years ago. Whether she remembered that particular incident will remain a question. At this point, we needed to concentrate on what was happening presently.
She asked me a few follow-up questions about the forms that I had just filled out. My old records were stored off-site, so it was like I was a new patient. If needed, they would access them for additional information. After she left, a few minutes later a nurse practitioner entered the room. I did not remember her from the past, and as she shook my hand and studied my face, she plainly stated that she was trying to remember if she'd worked with me before. Seven years is a long time, and we came to the quiet conclusion that this would be a new relationship.
The nurse practitioner gathered information that she needed and wrote me a prescription for more pain relievers. Some times there's a delayed reaction with radiation to the bone. I probably wouldn't feel any relief until after the treatments, and she wanted me to be comfortable in the mean time. She told me to double my dose of OxyContin and to use the Hydrocodone for breakthrough pain. It seems like everyone wanted me off of the Advil, the only thing that seemed to help, even though it was for short periods of time. I'd been on the Hydrocodone, and like OxyContin, it really didn't help. I suppose that taking both drugs together could possibly offer some relief, or alternatively, send me into LaLa Land. I feel like a drug addict.
Next was a visit with my new radiologist. I liked him right away. He had been studying my scans and had a good idea of how to alleviate some of the pain. There was nothing he could do about the tumors in my spine to relieve the back pain, but there were several sites in my pelvic bone that he could radiate to relieve the pain in the hip and possibly the groin. I am willing to try anything at this point. He added that radiation was very successful in relieving bone pain. It would only require two weeks of treatment, every day, Monday through Friday, for a total of 10 treatments. I would come back the next day for my markings.
On Friday, the radiology technician left the room as I pulled down my pants and underwear to the middle of my thighs, laid down on the table, and covered up with the sheet that he had given me. I told him I was ready, and he came back into the room. He positioned me on the table, binding my feet with a flexible and padded oval device. He then handed me another one for my hands so that my arms were stable across my chest. He adjusted the simulator to measure and mark my hips. All I had to do was lie still. Easy enough. He would leave the room, adjust the computer based on my scans, and come back and adjust the simulator. This routine went back and forth until he was satisfied that measurements were precise. When he was done, his assistant came in to actually measure with a ruler certain points on my hip, and they began to make markings ("X" and "L") on my body with a purple pen. I had one X on the right hip (for alignment only) and three X's on my left hip. Two L's were also on the left hip. He then covered the X's with clear, plastic tape. The L's would wash off in the shower, but the X's remained because of the tape. This all took about 45 minutes. He said if I had time to stay, he could check the measurements and program the radiation machine within 30 minutes and I could have my first treatment today. I had plenty of time, and it would save me a trip down the line. He led me back into the waiting room.
As I sat in the waiting room, I picked up a copy of "Why We Walk" about the 3-day walks for breast cancer. The walks totaled 60 miles and took place in several different cities across the country. I instantly wondered if there were participants who ran the event. Twenty miles a day for 3 days wouldn't be that bad. I've run 60 miles or more in one day on several different occasions. As I read some of the stories, I played with the idea of doing it, but raising $2,300 would require a lot of work. And I thought about a recent thread on the Breast Cancer Mets List Serv (http://www.bcmets.org/). Many thought that events such as the 3-day and the Race for the Cure 5K Races were not for us. They were tired of the pink ribbons and the accolades for only those diagnosed with primary breast cancer who had become "survivors". The advances in primary breast cancer have been phenomenal over the past few years, but the research has not been as successful for those with metastasized breast cancer because it's so hard to treat it completely. What works for "Mets" to the liver, doesn't necessarily work for "Mets" to the lungs, which in turn doesn't work for "Mets" to the bones. Those with "Mets" are continuing to die way too soon and are only "surviving". The thread emphasized that no one seemed to care that some of us had no light at the end of the tunnel and would never be "survivors." And those that knew about us condemned us to death while we were still here fighting this disease. We live for years with Mets, trying different treatments and having periods of regression, stabilization, and progression before it finally takes us out for the last count. I didn't agree with all of the points raised in the thread, but I did understand the frustration. When I was told that I had metastasized breast cancer in 2008, I found very little literature for Mets, but all kinds of books exist for primary breast cancer. I have one book geared towards Mets, "Advanced Breast Cancer: Living with Metastatic Disease", and it's been a struggle to get through it. It seems to focus on (I hate to say this) dying with dignity. It's not exactly what I was expecting. I wanted discussions about different treatments, clinical trials, natural solutions, nutritional suggestions, exercise options, and mental imagery. The book is very vague on all of these topics. The Breast Cancer Mets List Serv has been the most helpful informational source that I have found. These are real people dealing with the same things that I am dealing with on a day-to-day basis. There's an archive that is very helpful when investigating specific topics. The depressing thing is to follow one List member's threads over several years of posting only to come to an abrupt end of posts from that person. Usually, the reason why there are no more posts from that person is because that person passed away. I have yet to find out a person no longer posts to the List because that person found a treatment that cured them.
With my reading and thoughts, the half-hour passed quickly, and I was called back to have my first of 10 radiation treatments. Two female radiology technicians would be assisting me today. Each day I would be asked to verify my name, my birth date, and what part of my body will receive treatment on that day. I noticed a scan of my pelvic bone on the computer. How did they know where to aim the radiation beams? I expected to see clear holes were the cancer was eating through the bone or at least different colored spots where the Zometa was helping to rebuild new bone. Instead, it looked like any other pictures of a pelvic bone that I'd seen on the Internet. It looked healthy. It appeared strong and pain free. And yet, if that was the case, I wouldn't be here.
I answered all three questions correctly, and I was then ushered into the radiation room. Again I was asked to lie down, to pull down my pants and underwear, and to cover myself with a sheet that they provided me. The oval bands were placed on my feet and into my hands as before. The technicians went about their business of setting the machine and lining up my markings. They left the room to radiate the front of my hip. A couple of minutes later they came in to rotate the machine (all done with a remote control device) and then they left again. The machine radiated the back of my hip, and a couple of minutes later, the technicians said I was done. I fixed my clothes, wished them a good weekend, and told them I would see them on Monday.
Over the next 2 weeks, I have a regular appointment at 11:00 a.m. Monday through Friday. I can use my lunch break to take the short 10-minute drive to the radiology office, have my radiation in 5 minutes, and then come back to work. The schedule is perfect for me.
I am hopeful. If I can get to a pain free state of being, I think I will be more mentally and physically capable of focusing my energy on the work ahead. I have to catch up with my work in the office. I have to concentrate more on my fitness and get back to running. And, of course, I have to deal with my cancer. I am willing. I am able. I am ready. By a divine grace, I am here.
Monday, May 17, 2010
I had been sitting and reading my book. I always have reading materials with me when I know that I'll have to wait for an extended time. The cancer treatment center that I attend is always busy. Waiting is not one of my better virtues. So that I won't feel like I'm wasting my time and getting angry in the process, I have a running magazine or good book to take my mind off of the wait. Today, I was reading "The Good House" by Tananarive Due, one of my favorite authors. I was nearing the climax of the plot, and I was totally focused on the book that I had in my lap. It had to be more exciting than what my oncologist had in her lap.
My first thought as she rolled the stool in front of me was that "she never sits down." She's like a little dynamo, constantly moving, talking, smiling, and touching. I imagine that she has an excellent bed-side manner, but she spends her time in this office, on her feet, reviewing her patients' vitals, scans, and other tests; asking them about any side effects from various treatments; asking them how they are feeling; administering prescriptions; and determining which of the multitude of treatment possibilities would work for each individual case. She is such a petite woman. I'm a good 3 or 4 inches taller than her, even though she always wears high-heeled shoes. How she manages to stay on her feet all day in those heels is a mystery to me. I wear my sneakers most of the time, even when I'm in the office. She probably doesn't weigh 100 pounds soaking wet, so I'm like a giant compared to her. She's sitting, and this is not a good sign.
She was upset because the new computer system was double booking patients, and there was no way for the scheduler to correct this easily. Therefore, she was even more overworked than usual, trying to see twice as many patients as she normally would on a daily basis. She was tired. It was a good idea for her to have a seat, and it was a nice change of pace for both of us.
I had a bone scan on Monday, and PET and CT scans on Tuesday. Today was Wednesday, and I was there for blood work and to get my results from the scans. There are times when you already know the answer before you ask the question. This was one of those times. I had been in so much pain lately that even without the scans, I knew something had changed.
She told me that I have new "spots." There is a tumor on the left side of my skull. There are two tumors in my left lung. I had thought that the chest pains were from my breathing problems induced by the anemia, and my oncologist had originally thought that I may even have some congestion. More than likely, the tumors in my lung were causing the problems. She continued. There is also a nine millimeter tumor in my liver. How can they measure something so small, I wondered. There is also more visible activity in my left hip, with extensive inflammation. My tumor markers have been constantly rising. Clearly, the Femara had stopped working. At what point is not really definable.
She asked, "How's the pain?" Constant. Every day and all day. Last month when I had my Zometa treatment and my quarterly Lupron injection, she had given me a prescription for OxyContin (time-release morphine in a pill form), that was not working. I was told by several pharmacies that they do not stock this medication on a regular basis. As hard as it was to have the prescription for this pain reliever filled, I was still taking Advil and on a more frequent basis. It was the only thing that gave me relief from the inflammation. For all the good the OxyContin did, I should sell it on the streets and get my money back. I've read that this pill is crushed and snorted to get high. Hah! I did not feel high with OxyContin, and the pain I should not have been feeling with OxyContin, was still present. Aleve, which is what my oncologist prefers to Advil, was a complete waste of time and effort. Nothing helped with the pain, but the Advil did allow me to continue to move, to sit, and to sleep for a few hours a night. The pain is really bad when I lay down. Sitting is equally as bad. Surprisingly, standing and walking eases the pressure on the nerves in my back, along my hips, and down my left leg. So, I stand and walk as much as possible during the day. If nothing else, it's time on my feet for training purposes.
"We have to switch out the Femara with something else. And I'll check to see what other treatment protocols we can try." She left the room for free samples of Aromasin. Because my cancer is estrogen-dependent, the treatment protocols vary according to whether a woman goes through menopause naturally or the menopause is medically induced. My menopause has been medically induced by Lupron, but that situation also rules out certain treatment options.
When I started my treatments for the bone cancer, I was told that we would try Tamoxifen and all three of the aromatase inhibitors (AIs) first. Afterwards, there were other treatment protocols to try before chemotherapy and radiation. We would stick with a treatment protocol as long as it worked, and then we would move on to the next treatment protocol. As long as the cancer stayed in the bone, chemotherapy would be the last resort, because it rarely produced successful results for bone cancer. Now that the cancer was spreading outside of the bone, chemotherapy was back on the table as an option.
Tamoxifen lasted for about a year before it stopped working. And now the Femara, the first of the AIs, has stopped after about a year. I will be taking Aromasin next. After Aromasin, there is Arimidex, the last of the AIs. Faslodex will follow. "We're dragging our feet on the chemotherapy," she reminded me. We both knew why. I had read so much about metastatic breast cancer that I knew that at the point that we tried chemotherapy meant that I would be running out of other, less toxic, treatment options. As long as there were pills, injections, radiation, and surgery at my disposal, I should use them. Because of the toxicity, you can only be on chemotherapy for so long before you're taken off of it. Enough time has not gone by to make me forget about the horrible side effects of chemotherapy. I was in no rush to start that process up again. Let's try one more pill. Aromasin, you're up!
Along with the free samples, she gave me a prescription for the Aromasin. Aromasin is $450 for a 30-day supply. With my health insurance, I pay only $75 a month. Femara and Tamoxifen were cheaper at $25 a month with the health insurance. It boggles my mind that a pill that is the size of a Tic Tac can cost so much. A month's supply of Aromasin is a race entry fee. Aromasin had better work!
Next month, I'll have my Zometa treatment. She'll check my tumor markers to see if the Aromasin has had any effect. The next scans will be in four months to also check for any tumor regression, progression, or stabilization. If there's regression, she's hoping that the pain will also subside a little. If not, we'll try radiation. We're at that point now. Palliative treatment is always the goal for metastatic cancers, to make the patient as comfortable as possible. I really wanted us to drag our feet on the radiation, too, but quality of life issues are at stake now. It's hard to concentrate on anything else when all you can think about is the pain. We had the discussion with the neurologist at the onset of my diagnosis about radiating the tumors in my spine. It's a risky procedure, but apparently, radiation can be directed to alleviate some of the pain. I'm all for that.
It's taken me almost a week to digest everything. Even after three years (two and a half of those years on a treatment protocol of some sort), I still can't believe my body is failing me. The results of my recent scans are frustrating and makes me angry all over again. I'm an engineer. Give me a problem, so that I can find a solution. I don't stress about the details, and I don't care how hard I have to work to solve the problem. As long as I have a plan of action, I'm ready, willing, and able. Metastatic cancer is like a maze. You never know when you'll hit a dead-end, before you have to retreat and follow another path. I like puzzles, so we'll figure it out. I also like my oncologist. She worked with me for the breast cancer, and now, she's working on the metastatic cancer. I'm not giving up, and I'm not going to allow her to give up either. I have enough faith for the both of us, and my faith is stronger than any cancer that has or ever will invade my body. There is a solution out there for this problem, and I am confident that we'll find it. I'll practice patience and wait on time.
Tuesday, February 9, 2010
On Friday, I was at work, regretting that I was not on a plane to the Rocky Raccoon 100 Mile Race. For 3 years, the first weekend in February has been reserved for that race. My first 2 years were completions and then last year was a DNF. I was in worse shape this year than last year, and I didn't want to chance another disappointment at one of my favorite races. Therefore, I signed up for what I thought would be a sure thing - the Tallahassee Marathon. It was my fastest marathon in 2009, a very slow 5:12:12. I knew that I couldn't get even close to that time this year, but with a very flat course, I thought that I would have no problems beating the 6-hour cut-off.
Cheryl (FL) and I shared a room at a Motel 6 the night before the race. We have run several races together, including the Tallahassee Ultra Distance Classic 50K in December. Since then, I have been affectionately calling that race the Tallahassee Monsoon. If not for her company, I probably would have hated life that day, lol. It rained hard and steady all day. We stuck together for the whole race, finishing cold and sopping wet but happy. Cheryl tells lots of stories, whether she's running or not, and I wanted her companionship again. But Cheryl has also been cheating; she's been training, lol. She goes to the gym for elliptical workouts, treadmill intervals, and weights. Listening to her the night before, I knew I wouldn't be able to keep up her pace. She also was coming off a sub-5:30 at the Ocala Marathon the weekend before and would be gunning for that time this weekend. It appeared that I would be all alone in my struggle for a sub-6:00.
The weather was perfect, probably in the low 40s at the start and in the high 50s towards the finish. There was no precipitation, but it was overcast the entire time. I saw Phil (AL) before the start. Last year, Tallahassee was good to him, and he finished with a sub-4:00. He didn't think he would get a repeat this year, but he still finished very well in 4:22:44. Nice job, Phil!
Art (FL) was also there. I saw him at the Jacksonville Marathon in December. When we see each other at races now, it seems that we always end up talking about how our weight gain has screwed up our times. But we're still out here and doing our best. He finished in a fine time of 5:44:28.
We start with a small double loop through the Florida State University campus before hitting the roads to get to the 11-mile (22 miles total) out-n-back on a bike path. We then finish the race on the track. As we started, I saw my running buddy, Frank (MN), in his signature red shorts and red jacket. I rushed ahead to catch up to him, and I'm glad that I did.
Frank and I talked, laughed, and ran/walked our way through the race. He is always so upbeat, never complains, and seems to thoroughly enjoy every race that he runs. He has dragged me along in several races, but today would be a struggle to keep up. My normal aches and pains were along for the race, too, and they worsened early in the day. Several times I told him to go on ahead without me. He was moving well and effortless, but my strides were choppy at best and favored the side of my body with the least resistance. Right before we reached the half-way point, he took off. I was sad to see him go. But later, I mustered a little pep in my step and caught up with him again. He was talking with another runner and that must have slowed him down. We then continued on together.
Frank was keeping time for the both of us. No one would ever guess that I have a background in engineering, because my math is all fuzzy during a race. He would tell me when we were ahead of pace and when we were slacking off. I dreaded every mile marker when he told me that we had lost another minute. That meant more running and less walking and talking for the next mile. For the last 6-8 miles, I would ask how we were doing as we approached the next mile marker. I'm sure he grew tired of me asking. Heck, I was tired of asking. Every time I looked at my watch and calculated how much time we had, I didn't think we would make the cut-off. Frank kept reassuring me that we would.
At 5:53:51, Frank and I stumbled across the finish line. Cheryl had finished in 5:36:11, very close to her goal. Congratulations to her for placing 2nd in her age group! She waited for us and snapped our picture at the finish line (see above). Just like last year, the pizza was all gone, but I really didn't care. I appreciated my official finisher's time and shiny, new medal more than anything, both of which I owed to Frank. He could have left me out there on my own, but he sacrificed his own race to make sure that I crossed the finish line under the cut-off. Maybe one day, in another race, I'll be able to return the favor.
I missed being at the RR100, but in the end, it was the best decision for me this year. After finishing 26.2 miles, I couldn't imagine tacking on 73.8 more miles on this day. I'm glad that I was at the Tallahassee Marathon instead.
Sunday, January 24, 2010
Early Saturday morning, I drove the two hours to Monte Sano State Park in Huntsville, AL. Over the past few years, I had run several races either on the roads or trails in this park. It was a beautiful park and relatively easy to get to from the downtown area. I wanted to arrive just before the 8:00 a.m. start to see several of my fast running buddies before they took off. The race had been sold out for months, and there were about 350 starters. It had rained all week. But today, it was just cloudy and cool, a perfect day to be out in the woods. I hoped that the trails were dry enough, but looking at the area around the lodge, I figured that it would be a very muddy day for the runners.
As we headed for the start line in front of the lodge, I also saw Mona (AL). Mona is another strong runner. We met at the first Black Warrior 50K several years ago. She was working an aid station and swept the course for the last nine miles or so. Of course, I was the one that she was sweeping, lol. She kept me going, and we have been buddies ever since. I've yet to really "run" with her because she is so fast, although we've been in the same races several times over the years.
And they were off!
We quickly unpacked the van and started our set-up. We had two long tables, several large coolers of Heed and water, liters of Mello Yello and Coke, and a large tub of goodies: cookies, chips, pretzels, pre-made peanut butter and jelly sandwiches, bananas, gels, potatoes and salt, and bite-sized chocolate candies. Dink came by to see how we were doing. He gave us our long-sleeve, technical Mist shirts and took our picture. He asked if we had everything we needed and reinforced our instructions. No one was to continue the race if they arrived at our aid station past 2:20 p.m. We should start breaking down our aid station at 2:30 p.m. The park closed at dark, and if anyone continued after 2:20 p.m., they wouldn't finish in time for all of us to be out of the park by dark. He was serious, and all I could think about was the mud that I had seen on the trail when I arrived at our aid station. The mud would slow the runners down. We were going to have to pull some runners. He thanked us for volunteering and moved on to his next job.
Our first casualty came early. He had to have been in 14th or 15th place. He announced that he was done. He had all the time in the world. He could walk it in to the finish, but he refused to go on. I offered him water or Heed or some food maybe. He wouldn't take it. He went off to himself and sat down on a rock. When we had a break in action, I walked over to check on him. I knew that I was disturbing him, but I wanted him to finish. He could do it. No broken bones were showing. There was no bleeding. There wasn't anything visibly wrong with him. Yet, he couldn't go on. We didn't know what was going on inside, and he wasn't offering an explanation. He could have been in great pain. He could have been unbelievably tired. He could have been just mentally out of the race. Whatever it was, he knew, and we didn't, that he had to drop from the race. My heart went out to him. Usually when I drop from a race, it's because I can't make a cut-off. I did not understand not going on when there was plenty of time on the clock. I offered to get him anything he needed. He gave me a blank stare, one that cut through my soul. "No," he responded flatly. I left him, feeling stupid, wondering why I had gone to him in the first place. He was indeed done. I felt I had failed as a volunteer because it was my duty to keep him going. Runners were steadily coming in, and I had to stay the course. Water? Can I top your bottle off? How's it going out there for you?
Several more runners came through. One at a time. The clock was ticking. The timers were looking at their watches and checking the list. There were runners who would not make it. Where's Graham and Diane?
The time was 2:20 p.m. And we saw Graham emerging from the trail on the other side of the road. He was walking. I started yelling for him to get into the aid station. We all did. I looked over at the timer. He's a good runner, I said. He's strong. He'll make it. We have to let him go on. She looked doubtful, but when he made it to our aid tables, she nodded that he would be the last one to leave. I was so happy I couldn't contain myself. You made it, Graham! He looked at me and said matter-of-factly, "No, I didn't."
Heather was crying. How many times had I been pulled from the race, crying, knowing that I could go the distance if not for the clock? She stood stark still. I watched her, wanting to go to her, wanting to hug her, and lie to her that it would be okay. She could come back next year and finish. She had put in a valiant effort and 24.9 miles on this course was nothing to beat herself up over. It was hard today, with the cold and with the mud, not to mention the rocks, covered with leaves, and the steep climbs. None of that would have mattered to her. I knew all too well that nothing a volunteer said mattered at times like this. I watched as another volunteer went to her. Heather commented that when she had fallen, getting a gash in her forehead just above her right eye that had been bandaged at a previous aid station, she had lost so much time. She cried again, just thinking about it. Who knew what other demons she had been fighting out there?
I sat at the finish line at the back of the lodge. The timers were removing the tags from the runners' bibs as they crossed the finish line. A volunteer wrapped them in a mylar blanket to keep them warm. Another volunteer handed them a finisher's card to be filled out to receive their finisher's plaque. I had heard several runners say that at the bottom of the mountain, it had become warm, but once they finished up on top of the mountain, it was windy and cold. I don't believe we ever reached the promised 55 degrees from the weather reports. All of the runners had to remove their shoes and socks before entering the lodge. All I could think about was how their poor feet must have felt walking over the cold concrete that led inside the warm lodge. Hot pizza was waiting for them if they made it in successfully.
And then we saw his signature yellow Marathon Maniacs shirt coming up the last hill through the finish chute. He crossed the finish line in 8:28:40, looking tough, like I aspired to be. We cheered loudly for him, the last finisher. Grand Slam Graham is what Mona called him. Indeed he was! Everyone wanted to take a picture with him. We all gathered around at the top of the mountain in the cold wind, nearing 4:30 p.m. to do just that (see above). It would be getting dark soon, and we had to leave the park. We had to get him inside, get his finisher's plaque, and his Grand Slam finisher's jacket.