Friday, September 23, 2011

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Thursday, September 15, 2011

Xeloda - 9/15/11

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

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

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

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

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

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

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

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

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

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

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

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

Tuesday, September 13, 2011

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

13 Facts Everyone Should Know about Metastatic Breast Cancer

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

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

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

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

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

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

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

8. Young people DO get metastatic breast cancer.

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

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

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

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

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