Spinal Tap - 12/15/10

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

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

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

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

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

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

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

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

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

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

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

Chemotherapy - 12/2/10

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

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

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

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

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

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

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

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

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