The New Normal - 3/6/12

She never asked "why me?"

The answer would have been "why not me?"

But she's hurting, she's sick, and she's tired.

"You're strong," they tell her.

She feels like a fraud.

She feels weak, sad, and mad.

"You look good," they tell her.

But her eyes are yellow.

She's lost 25 pounds.

She's losing her hair again.

Neuropathy has taken over her left foot and both hands.

What has happened to her body, mind, and spirit?

A force stronger than her has taken over.

She wonders how she'll make it through another day.

Too much chemotherapy, radiation, injections, pills, blood transfusions, and hospital stays.

It's enough to drive a sane woman crazy.

But she keeps going.

Not knowing how to give up or to give in.

"It could be worse," she tells herself.

But it's no comfort.

She misses being herself.

She misses feeling good, full of energy, and being happy.

She wants her life back.

She can't adjust to the new normal.

It sucks big time.

She watches another beautiful day from her window.

"I want to run again," she says.

Instead she shuffles back to her couch, in front of the television.

Sitting, tears in her eyes, and gasping for air, she knows that she can't even walk too far before feeling faint.

One day, she'll run again.

She knows in her heart that the new normal has to be temporary.

She will be well again.

Patience she's never had would come in handy now.

Hope is all that remains.

She has to believe.

On the Road to Recovery - 2/16/12

On Wednesday, February 8, 2012, I transitioned from being under anesthesia for a little over an hour to a full consciousness of pain. Had I been shot or stabbed? Is there anything worse? The only word I could say was "hurting" over and over again. And when my friend, Jackie, came to take me home and gave me a hug, I only remember saying to her "hurting". What have they done to me? I could not lay still and when I sat up, I was still moving on the bed like a caged animal. I knew that moving around was making it worse, but I couldn't help myself. All of these people around me and no one can give me instant relief from this burning pain? Oh, God, please stop this pain!

One of the nurses told Jackie that the doctor had decided to keep me in the hospital for overnight observation. I would not be going home after this second ERCP. In fact, I was not dismissed from the hospital until Saturday. Two liver surgeries in two weeks may have been my body's limit. My entire midsection was hurting after the first surgery, but this was 10 times worse. I felt like I was going to die from the pain.

At some point, one of the nurses inserted a small amount of fluid from a small needle through the tubing of my IV. Within 5 minutes, my entire body became comfortably warm. That feels wonderful, I thought. Within another 5 minutes, I was laying still, enjoying this magical pain killer. On a scale from 0-10, I was now at a pleasant one, and all I wanted was to curl up into a ball and sleep. One of the nurses also noticed that I was grasping for air, finding it hard to breathe, so they hooked me up to supplemental oxygen. I hadn't even noticed. I was just so glad to not feel any pain that breathing had become inconsequential. I remained on the supplemental oxygen the entire hospital stay. Since I had calmed down and they had found a room for my next few days of stay in the hospital, I was wheeled away.

Over the next few days, I began to rely on that pain killer in that small needle. I could have it every six hours, which was torture because it only lasted for four hours. And I had to ask for it. The nurses would not offer it. But when I did ask for it, they would either tell me that I could have it because it had been six hours since I'd had my last dose or they would tell me that I could not have it because it wasn't time yet. It was embarrassing to ask for the pain killer. It made me feel like a drug addict. And I could not keep good track of time because once I had the pain killer, I would sleep for an indeterminate amount of time or until it was time for the next set of vital checks: blood pressure, temperature, sugar, and oxygen level. They would also occasionally listen to my lungs, give me potassium pills, check my blood, give me a shot in my stomach (not really sure what that was for), and give me a pink liquid to drink (not really sure what that was for either). I also had a constant IV drip for fluids and antibiotics. Any other time I would be conscious enough to ask what's the name of that drug, and why are you giving it to me, but pain and pain relief leave you with a cloudy mind and all you can think about is how bad you feel when the pain is there and how good you'll feel when the pain goes away for a few hours.

The gastroenterolgist came in every day to check up on me. The stent that he had placed in the bile duct during the first ERCP was plastic and although it was placed and working properly, it was not solving the problem. He decided that he would replace it with a more permanent, metal stent. But all of that movement with a tube through organs and by organs had irritated the pancreas. And it was pissed off royally! Pancreatitis, he told me, involved inflammation and swelling, but it was one of the hardest conditions to treat because the pain was so intense. Hah! Tell me about it! The only thing he could do for me was to give me pain killers until it healed on its own and that would take some time. Who knows how much time.

I couldn't breathe, and I was coughing a lot, even with the supplemental oxygen. I had to have three breathing treatments during my hospital stay. These treatments were also wonderful. All I had to do was breathe normally while my lungs filled up with the medication from the mask. It was the only time I wasn't struggling for air. I also had three chest x-rays. The problem with the chest x-rays is that they can't distinguish between the lung tumors and pneumonia. They look the same on the scan. More than likely it was the tumors causing the problem, but we had to treat the problem as pneumonia, because the lower half of my right lung was collapsing.

Two more of my co-workers came by to visit me on Thursday (another Jackie and Brenda) and one on Friday (Dennis). They really lifted my spirits, telling me of all of the happenings in the office. I was really out of my comfort zone, because I knew I looked bad with the jaundice in my eyes, hair all over my head, and tubes and IV bags everywhere, while the nurse is busying around poking and prodding me. When I feel bad, I just want to be alone. However, they were so upbeat that they made me feel better and took my mind off of the pain for a while.

On Saturday, I was finally released from the hospital. My only regret was that I would not get the pain killer any more. I was still hurting quite a bit and sending me home with Oxycodone was not going to get it. But I also wasn't turning it down, lol.

Eating was another problem. Up until Saturday morning, I was on a liquid diet (jello, popsicle, tea, water, and juice) and wasn't finishing those meals. My stomach feels full and after a few sips, I can't take anything in without pain or wanting to vomit. But on Saturday morning, when the dietary person brought in my tray of solid food, my stomach opened up some space. I had a scrambled egg, a biscuit with jelly, Cheerios with low fat milk, and juice. I was surprised that I was able to keep it down, but it was also after I had my last dose of the pain killer so that must have been the trick. Eat when you're not in pain.

The remainder of the weekend was spent in the comfort of my own bed. I didn't feel like doing much. I was burned out on the television, and I couldn't keep my eyes open long enough to get any decent reading done. My main concern was minimizing motion and controlling my pain level with the Oxycodone, which I was taking about every four hours, but not with the relief of the pain killer that I was given in the hospital. Did I mention how wonderful that drug was, lol?

On Monday, I was not able to return to work. On Tuesday, I had an appointment with my oncologist. If the second ERCP worked then I should be able to restart chemotherapy. My oncologist sent me to the treatment room to start me on a two hour IV bag of fluids, while we waited for the results of my liver numbers. The bilirubin was still increasing, higher than before the second ERCP. Would they suggest a third ERCP? The thought of it almost made me want to cry.

Instead, I was scheduled for a CT Scan of the chest, abdomen and pelvic areas on Wednesday. The gastroenterologist did not feel another ERCP would help. It was decided that the liver was failing because of the tumors and would probably work just fine if we could do something about the tumors. I had just had CT Scans in December and January, so something must have drastically changed in less than a month's time. There was definitely more progression in the lungs, but the most significant change was that my liver is now comprised of 50% tumors. Half of my liver is tumors, and the other half of my liver is barely functioning. I was immediately kicked out of my last clinical trial. Most chemotherapy drugs, especially the newer drugs depended on the liver for metabolization. My liver was not in a position to metabolize anything.

I'm distraught. My oncologist sits and looks about as distraught as I feel. She flipped through the file, reading and rereading. I could see the wheels turning. She was also thinking and rethinking. "There's one drug, an older, conventional drug that you've been on before with your primary breast cancer. Insurance may have a hard time justifying approval. Do you want to try another drug?"

She knew that I did. I could see the relief on her face when I said we should try it. She left the room for a few minutes to check files and to get me started on the drug right now. Gemcitabine (Gemzar) is a kinder, gentler chemotherapy drug if used by itself. She would also reduce the infusion time to 30 minutes from 60 minutes, and if I handled the toxicity, she would increase the dosage. The most important thing is that the liver does not have to work as hard to metabolize it as it does with other chemotherapy drugs. If the 50% of the liver that is remaining can help out just a little, we have a chance of shrinking the tumors in the other half of the liver. It will give me another two months (eight months from this past December) if this works. I'll take my chances. It's a 4 week cycle. Once a week for three weeks followed by one off week. So, on the heels of bad news, my oncologist comes up with some good news. Have I mentioned lately that I love my oncologist?

ERCP #2 - 2/7/12

My urine is still dark. The whites of my eyes have turned yellow again. There is no relief for the itchy skin which has returned with a vengeance. Today, when I went to the treatment center to restart my chemotherapy, I didn't get beyond the IV bag of steroids before they told me that the results of my liver function numbers were back. The numbers were worse than they were before I had the ERCP. The liver is still failing, which makes it impossible to restart the chemotherapy. Clearly something is not right.

I've been scheduled for a second ERCP on Wednesday. The procedure itself is not that bad. The recovery, however, took longer than I expected from the ERCP that I had last week. My midsection was very sore, making it hard to move around, sleep, sit, or stand. I lost another three pounds because I couldn't eat or drink very much. My throat was also painful from the tubal insertion. A week later and I am just getting back to a feeling of normalcy. I can't imagine going through the recovery process again so soon after the first ERCP. But I have no choice.

The gastroenterologist will check to make sure that the stent that was placed last week is functioning properly. If it's not, he will replace it. If it is, he will place another stent along the bile duct to increase the flow. This has to work. We are running out of time. A poorly functioning liver with extensive tumors has an expiration date of less than six months. My six months started in December. This is February. I'm beginning to feel a sense of urgency, and I don't like that feeling. It's like approaching a looming cut-off time in a marathon or ultramarathon. Will we fix my liver before it craps out on me? I'm praying really, really hard today because for the first time in this journey, I'm scared.

ERCP Update - 1/31/12

I knew my oncologist would not be satisfied that my ERCP was scheduled for February 7. When the gastroenterologist's office called yesterday to tell me that they had rescheduled me for February 15, I knew my oncologist would hit the fan. She really expected the procedure to be done and over with when I walked into her office this morning. She was ready to start my chemotherapy again. By the time I saw her, after my vitals and blood work had been done, my ERCP had been moved to tomorrow. I love my oncologist.

Today I only had an Aranesp injection for the anemia and no chemotherapy because, of course, the bilirubin is still increasing. We have a definite plan, pending the results of the ERCP. If there is blockage that can be fixed and the liver numbers start going back down by next week, we'll continue with the clinical trial. If there is no blockage, then we know that my liver issues are either treatment related (in which case, I'm off the trial) or the tumors have completely consumed the liver and are hendering liver function (in which case, again, I'm off the trial). My next treatment will be Eribulin, a chemotherapy treatment that has been approved for metastatic breast cancer for about a year. I'll have to do some research on the drug over the next few days.

Knowledge is power in my mind. After my appointments with my oncologist, I am on the Internet gathering as much information about my condition as I possibly can. I want to know what's going on with my body. I'll never be as knowledgeable as my oncologist, but I think that I can have a reasonably, intelligent conversation with her if we were to sit and discuss MBC. But because I have such a personal interest in the disease, I tend to forget that others around me don't have that type of information. Every now and then, I'm thrown off-guard by a question that I would think is rhetorical, and the person asking it thinks that it's perfectly legitimate.

Upon telling my supervisor that I may be out of the office for a couple of days because of the ERCP, she simply asked, "why don't you have a liver transplant?" I wasn't upset by the question. I was just stunned that she thought my problem could be so seemingly easily fixed. I told her that people are on the organ transplant list for years, some dying before their turn comes up. And even if I made it to the top of list, a Stage IV cancer patient is not a good candidate for an organ transplant. They would put in a good liver, only to have my body reinfiltrate it with cancer cells. If you have an organ for transplant, you want the person who receives it to have a relatively good chance of living afterwards. I understand that. If I wasn't so engrossed in the world of the MBC patient, maybe I would have asked the same question.

ERCP - 1/24/12

I'm scheduled to have an ERCP (Endoscopic Retrograde Cholangiopancreatography) on February 7. Until then, I'll be getting a chemo break. My liver is worsening, with the bilirubin continually rising. My oncologist has done about all she can do with the fluid and antibiotic infusions, so she sent me to a gastroenterologist. Since I had to miss my chemo treatments this week because of the poor liver function, she rescheduled me for next week for chemotherapy. Even though my bone and CT scans from Friday were unremarkable (some tumors had shrunk and others had grown), she's declaring me "stable," and I get to remain in the clinical trial. But she can't treat me if the liver continues to fail. I'm sure she'll be disappointed when she finds out that the procedure can't be done before next Tuesday. They did tell me that if there is a cancellation, they will move me up on the schedule. If I have the procedure on February 7, I will have missed a whole three week cycle of chemotherapy. We're in a dilemma.

After my oncologist and the gastroenterologist consulted, looking at scans and liver function, they concluded that a bile duct may be blocked. The ERCP is a procedure that involves inserting a tube through the mouth, down the esophagus, into the duodenum (opening to the intestines), and looking at the liver. A dye will be injected for an x-ray, and a search for any blockage of the bile ducts will be conducted. Since the liver tumors are so extensive, it's a possibility that one of the tumors is causing the blockage. If the gastroenterologist can remove the blockage, a stent will be inserted to keep the duct open. It's a relatively simple procedure if everything goes well. There are risks of bleeding, infections, inflammation to the pancreas, or a perforation to the intestines. The more common side effects after the procedure are a sore throat and stomach pains. It's an out-patient procedure. They will only give me what I call the "happy drug" (for relaxation) and a local anesthesia for the esophagus. If there are no complications, I'll be able to go home on the same day as the procedure.

It's funny how you learn to live with certain things that are going on with your body. I don't even really notice the symptoms of liver failure. My oncologist and I had talked about the dark urine. I thought that I was just dehydrated and continued to drink more water. My skin has been really itchy lately. Until the gastroenterologist asked me about it yesterday, I thought it was just dry skin from the winter weather (although I lotion up regularly). I had a little jaundice when I was admitted to the hospital in December. The whites of my eyes had turned yellow, but they are back to normal now. The nausea, headaches, and dizziness are so common for me, but the gastroenterologist asked me about those symptoms as well because they could indicate liver failure, too. I do have pain on my right side occasionally, but I've become accustomed to having pain. I'm always at a lost for words when my oncologist asks me if I have any new pain, lol.

Well . . . all I can say is that I hope the ERCP gives us some insight on what's been going on with my liver. Let's fix it, and get back to the chemotherapy. We have some tumors to knock out of commission.

My 44th Birthday Celebration - 1/8/12

Naresh and I with "the cake".

I'm lucky that Naresh did not put 44 candles on the cake, lol.

Channel 4 News in Nashville, TN came out for an interview.

On Saturday, the day before my birthday, I wasn't sure if I would be able to walk 44 miles on my birthday. Running was out of the question, but walking was possible, if I took it easy and slow. Besides, it wasn't a race, and I had no time restraints. I wanted to finish the walk on my birthday, but it was early into the next day that I finished with several friends.

On Saturday, I wasn't feeling well, not breathing well, too tired, and having too much pain. As I laid in the bed most of the day, I was close to scrapping the walk. I had nothing to prove. I've gone beyond 44 miles in a day several times. I had only told a few people that I was considering it, so if I backed out, it wouldn't be a big deal. But something inside kept pulling me. I was too out of shape to go to my beloved Bandera 100K, which is always held on the weekend closest to my birthday, so I felt the need to do something. I'm not a big birthday person and would just prefer to treat the day as a normal day, but when something gets in your head, and your heart, it's hard to let go of the idea. I've had a rough year. Being 43 has not been kind to me, but I am still here. And I guess that's why when my alarm went off at 3:15 a.m. on Sunday, January 8, 2012, I got out of the bed, dressed like an Eskimo, packed even more clothes, extra shoes, fluids, and snacks, and headed out the door.

About a mile from my house is a community center that has an outdoor, paved walking path. Three loops of the path equals a mile. To get in 44 miles, I had to accumulate 132 loops. I had a notepad in the car to mark off every 6 loops (2 miles) to coincide with my break times. I took long breaks, but I wanted to enjoy the day and not suffer through it, so the long breaks were necessary. I had my MP3 player to keep me company and at 4:15 a.m. I started my walk.

There was a full moon, which was a nice touch. It was a cool 42 degrees, as told to me by the marquee at the Walgreen's across the street from the community center. There is also a Krispy Kreme next to the Walgreen's, but I refused to go there. Even with 44 miles, I wouldn't be walking off enough calories to justify those doughnuts, lol. A White Castle is also at the intersection. At some point during the night, I dragged my walking buddies, Diane T. (TN) and Linda (TN), across the street so that I could get an order of 5 cheese sticks. That hit the spot!

Okay. I've gotten a little ahead of myself, thinking about those cheese sticks, lol. The first few miles went well, of course. I even picked out a slightly down hill section of the otherwise flat path to jog a little on each loop. Once the breathing became too difficult to recover on the next lap, I gave up the little jog and just walked. I averaged about 3 miles an hour, which is what I expected and what I had been doing the last couple of months. As morning came, the traffic on the roads picked up, and people started going to White Castle and Shoney's for breakfast. At about 5:30, I could smell the bacon coming from Shoney's. I have not eaten meat in about 16 years, so I don't even know why that smell was tempting me, lol.

At about 7:30 a.m., I received a call from Lois (MI), a fellow 50 States Marathon Club member. We hadn't talked for a while, and so it was nice to hear from her. I think I even lost count of the loops, so I did an extra loop, just to make sure, lol. Hopefully, I wouldn't be doing that all day, lol.

Things got kind of crazy after that first phone call. I remember talking with another running buddy, Winston (GA), several times during the walk, and then I talked with Diane B. (TN). I took a long break, drove home, and had lunch, half of a Kashi veggie pizza. While at home, my niece called to wish me a happy birthday and, in turn, I talked with 3 of my 4 nephews and my 2 young grand-nephews. It was really sweet, and it gave me the motivation to drive back to the community center to continue the walk.

After a few more loops, Naresh (TN) called to say he was on his way to walk with me. At that point, I was almost to the half-way point and a long way off my schedule of finishing in 15-16 hours. I decided to take another break at home before Naresh got there, but he made it to the community center just as I was leaving the house to go back to the community center. He was a sight for sore eyes. I was so happy to have someone to walk and talk with. Part of the joy of running races for me is to socialize. I've missed that over the last two months of not racing.

Linda (TN) came next. She's in the process of training (or "practicing" as she likes to call it) to run her first marathon at the Country Music Marathon in Nashville, TN. I am so proud of her. She "practiced" 13 miles on Saturday and then came out on my birthday and walked 22 miles with me, her longest distance. I feel that she will be more than ready for the marathon in April.

And the local Channel 4 News called me. What?! They wanted to interview me for a possible news story. Diane B had tipped them off. Publicity is not my thing. And who would be interested in some unknown woman having a mid-life crisis, doing something as mundane as walking her age in miles on a small path on NFL play-off Sunday, lol?

Before we knew it, a Channel 4 News van had pulled into the parking lot. We did a short interview, and the interviewer (forgot his name) filmed some footage. At some point we were also joined by three of Diane B's friends (Laura, Cheryl, and Will). Now we had a posse circling this small loop.

The day went on. The conversation and company were uplifting. And slowly, but surely, the miles kept accumulating. Naresh gave me a beautiful and yummy birthday cake, complete with candles, which I successfully blew out while making a wish. Throughout the day and night, we shared cake with everyone who came out to the walk.

Day turned into night. Rashmy (TN) came out to join us. Inspired by Naresh and all of his running adventures, she is also just beginning her running career, and she was a pleasure to meet. Channel 4 News came back out to get some night footage. I was informed that the story would air on the 10:00 p.m. news that night. Unfortunately, I was still circling the small loop and did not see it "live", lol. It wasn't until Monday that I read the short article and watched the video. I looked like a bum with all of my mismatched clothing, and I wasn't prepared to talk about the walk or answer the questions about my metastatic breast cancer. I basically said what came to the top of my head.

Phone calls came throughout the day and night: my running buddy, Phil (AL), my oldest nephew, my sister, my uncle, and I know I'm forgetting others. Gene (IL) was on his way from Maryland. He called to let us know how close he was and to check on my progress. He made it in time to finish up the last 3 or 4 miles, saying that it was kind of scary to drive 75 miles the whole way, lol. Trent (TN), the race director of the famous Flying Monkey Marathon in Nashville, TN and his friend Kristen (?), came out to share some loops. A co-worker, Dustin (TN), whose also planning to run her first marathon at the Country Music Marathon, came out after she saw the news coverage.

Cheryl and Bryan (?), who had turned in for the night, decided to get out of bed after seeing the news coverage and share my last few miles with me on the loop. I hope that I'm not forgetting anyone that I talked with or who came out. It was just an incredible outpouring of love and support from old and new friends. I could not believe it. About 20 minutes after midnight, Linda, Diane T, Gene, Dustin, Cheryl, Bryan, and I finished lap 132, completing 44 miles for my 44th birthday, celebrating life, and giving cancer a kick in the teeth. It was the best birthday that I could have hoped for. I ended the night with loving hugs from everyone.

On Monday morning, I was sore. Parts of my body hurt that you would think would have nothing to do with walking, lol. I can't remember the last time that I've had muscle soreness. I have just always been in shape to cover a marathon or ultramarathon weekend after weekend without muscle soreness the next day. Losing two months of conditioning and fitness does that to you. But, here's the thing. I welcomed and embraced that soreness. I had completed the task at hand with my friends, feeling strong and invincible. Cancer can not take that away from me.

Cancer is an evil, little devil, and it did a check mate on me on Tuesday. I went into the treatment center to have my vitals checked and my bloodwork done. I had Cycle 2 of my current treatment protocol last week. Other than being ill on Saturday, I thought I had handled Cycle 2 much better than Cycle 1. However, my temperature was high, the white and red blood cells had tanked, and my bilirubin was high again. The research nurse and my oncologist discussed the matter. They were sending me to the hospital for a blood transfusion.

Over the last few months, they have been threatening me with a blood transfusion. I'm always anemic, even when I'm on the Aranesp (and one bout with Procrit), which is an injection to boost the red blood cells. I'm also not having much luck with Neulastra, the injection to boost the white blood cells. They were really concerned that my breathing was so labored and that my dizzy spells had been picking up. I even had a couple of dizzy spells during the walk, but I just slowed down and breathed deeply to make it go away or I took a longer break after the next two miles.

It's a long process to get a blood transfusion. The first three hours involve "screening and typing". I found out that my blood type is O-positive, which I should have known a long time ago. In the meantime, we're placed in a small treatment room with about six lounge chairs. We had one bathroom to share. Unlike the lounge chairs in the treatment center, each chair has it's own television screen. I was impressed and alternated between reading and watching non-sensical television, lol. There were four of us there for blood transfusions, and two oncology nurses took very good care of us. After the "screening and typing", the first bag of blood is brought in and runs as an IV for two hours. Once that's done, a second bag is brought in for two more hours. Tylenol and Benadryl in pill form are the only pre-medications given. Afterwards, you are free to leave. It's very rare that allergic reactions occur during blood transfusions, and you don't even know anything is going on unusual unless you look up and see the bag of blood hanging from your IV pole. I was told that I should feel like a new woman on Wednesday. I do feel better today, but I'm also still on my high from my birthday walk, lol.