Denial Ain't Just a River In...Where?

I’ve said to several people that in order to deal with this disease, you have to believe, almost to the point of delusion, that you WILL get better. Science is not on my side, but God is in control, not science. I pray every day for God to work His perfect will in my life. Then I pray for miracles. I would love to make it through this. It would make quite a story to tell when I’m 80. I can picture it now. Young people will see me coming and say, “…oh no, here comes old Mrs. Bradwell talking about how she almost died in her 30s…do you even think it’s true??” LOL.

Denial is a word I’m very familiar with. I’m guilty of it sometimes, and I witness it almost on a daily basis. In December around the holidays, I was in the office alone, and I had to call one of our IT contacts in headquarters. We hadn’t talked live since I came back from medical leave so he asked how I was doing with treatment, my hip, etc. Before I could even help myself, I told him I was feeling good (which was true), and that I was in “maintenance treatment.” What the hell?? Chemotherapy isn’t maintenance treatment. Me taking a daily pill and monthly shot for six months before I had to go BACK to chemo was maintenance treatment. But it just came out, and I knew it was because I was still reeling from disappointment and sadness over having to go back to chemo after getting 6 months off. Also, I really like my contact in HQ, but how much did he really want/need to know? I don’t think anyone really wants to hear, “well, I feel like shit and my head could be used as a mirror because it’s so freaking bald, and I sure do wish I had my 22 year old butt back instead of carrying around a science project looking waffle ass…”  So generally, I tell most people, particularly at work, that I’m cool and feel fine. I do feel fine, considering what’s going on. So I just try to joke around with myself about the rest, think of something that makes me laugh, and go on.

My parents are struggling too. They are always good to me and I believe they would do anything for me. For example, my mom makes the best chicken and dumplings I’ve ever tasted. She never enjoyed cooking much, but there are a handful of dishes that she totally excels at, and chicken and dumplings is her masterpiece. All I have to do is ask, and she and dad will come over and make them after church on Sunday. They are a hit with the whole family, so everyone comes over and we make it a big family event. It’s awesome. But when it comes to me being sick, they are really struggling. My mom was very pretty when she was younger and she is still attractive for her age. She puts a lot of emphasis on physical beauty, and most of the time, she sees me when I’m at my physical best. I won’t leave the house without my wig or makeup – that’s part my vanity that I get from her LOL. So when I come to church, I’m loaded up with BB cream on my face, topped off with Bare Minerals and Colorstay gray eyeliner to compensate for not having eyelashes. I’m certainly not beautiful, but when I try really hard, I can pull off “reasonably healthy” when I wear enough makeup and put my hair on. My mom equates looking good with good health. She just can’t believe that I could possibly be so sick while looking and feeling so good.

One day when mom hugged me she commented that she was so thankful for her totally healthy daughter. She’s also told me that she never really thought I would die. I want her to think positively and it makes me happy that she’s not all doom and gloom. However, with this disease, you have to be realistic. I don’t want her or dad to be shocked if I die. I think that would make the grief process even harder. My dad won’t even talk about it. The conversation shifts from topic to topic, until we are on something else. I try really hard to be patient and I never say anything to either of them. I just smile and tell them I’m trying my best, then I say a prayer for them. Being the younger child, I’m sure they still see me as a kid sometimes. Maybe that’s the only way they can cope with all of this.

Sometimes, even John seems to be in denial. We don’t really talk about cancer much. Frankly, I don’t want to talk about cancer all the time. That’s one reason why I keep this blog, so I can write it all down, and then think about something else. John listens when I tell him what’s going on – he rarely gets to go to the doc with me because he’s in court all the time. I don’t want him missing work because if I ever do get to the point to where I can’t work, I need him to be safe in his job.  But he never ever talks about how he feels. Is that denial? Or is he just protecting me from how scared he is? I’ve seen him cry a handful of times, but it’s very quiet. He takes his glasses off and wipes his face with his hands, very quietly. He’s not a dramatic ugly cryer like me. When I cry, it’s hard with deep gasps for breath, and the red splotches stay on my face for at least 2 hours. But John is pretty much the same all the time, even when he’s stressed or mad, he doesn’t really wig out much. For the most part, I like this because I can be pretty high-strung, so he keeps me calm and cool. But it worries me too. Does he need to talk to someone? He didn’t even tell one of his dearest friends about our situation until I had been sick for a few months, and I still don’t know how much John told him. He didn’t tell his dad and brother until about two weeks before we visited them in Albany – that was almost a year after my diagnosis, and his dad and brother still don’t know it’s breast cancer. John’s mom died of breast cancer, so he worries that his family will be negative about it, or try to compare it to his mom’s battle. I’ve left the decision all up to John on what he wants to tell them. In addition to that, his dad is 12 hours away and in his 80’s. He seems to like me, so why make him worry when there isn’t much he can do, right?

One person that I can always talk to no matter how I feel, even when I feel really scared or super shitty, is my sister. I tell Cat everything and she always listens AND she talks too. She even tells me when she is scared about what might happen to me. I’m so thankful that we can have that kind of honesty with each other, and that I can cry my eyes out, or even joke around about what might happen. She never judges and always makes me feel better. I found out the disease was in my bones around Thanksgiving 2009. Me and Cat always do Black Friday shopping and I felt soooo bad that day. My leg was getting worse and I knew it. I was so scared and I limped all over the mall, praying for it to get better. When I drove her home, we sat in my car with the car running, probably for an hour while I cried about being so scared to die, and that I wasn’t ready to go and I had so much I wanted to do. It must have been heartbreaking for her to witness my meltdown. I know that if the tables were turned, I would be worried to death all the time. But she listened and comforted me. I don’t know how Cat deals with it. I pray for her at night because having her in my life is so important and I know she must be so tired.

So that’s the denial stuff. I’m guilty of it, my family is guilty of it, and John is guilty of it. What can you do? We are human and have to cope. Sometimes I I’m totally accepting and realize that I will probably not live to be old. Other times, I’m convinced that I WILL get better. I pray for my family every night though. It’s easy for people to feel bad for me because I’m the sick one. But my family, John and Cat in particular, carry this stuff around with them every day. To anyone that reads my blog and prays for me, please remember my family and husband in your prayers too. They are great to me, but I’m sure it’s a tough life sometimes.

More Treatment

Effective yesterday, I'm back in weekly treatment. I don't get scanned again until April, but my tumor marker just keeps climbing. Right now, it's in the high 600's. Kinda scary. So the doc changed my chemo drug to Gemzar, and I'll be getting it every week for 3 weeks, and then have one week off.

So far, I feel pretty good. Honestly, I do better with weekly treatment in every way. In January 2010 when I started weekly treatment because I had disease in my liver, within a month and half of starting the treatment, my tumors shrank and my tumor markers fell. Then again about a year and a half ago, when I started back on weekly treatment after a short break, my tumor markers fell drastically again. I also physically feel better on weekly treatment. Both times I've been on the "every three week" regimen, I felt like I was blasted and felt like crap for 2-3 days. On the weekly treatments, I feel a little weird the day after, but I'm still functional.

I also told the doc about exercising and trying to strengthen my leg and the rest of my body. I need to continue doing it, but the chemo does slow down muscle growth. So I'm just going to have to keep pushing and be even more patient. I feel much better when I exercise, so that's a plus. At least I don't have to make myself do it.

Although I'm disappointed that my TM doesn't want to come down and my bones don’t want to get better, I am not going to let this get me down. According to the doc and nurse practitioner I saw yesterday, Gemzar is powerful and the drug of choice for pancreatic cancer treatment. If it can shrink tumors associated with pancreatic cancer, then I have a good feeling that it will work for my cancer too. I’m also no longer doing the Neulasta. The bone pain was just too much. I promised the doc that I would take super good care of myself so he stopped it, thank goodness!

I pray for God's perfect will to be done in my life, but I also pray for total healing and miracles. I ask God to use me to do His work and to lead me in the right direction. It may be a contradiction to say "please work your perfect will in my life..." and then ask for total healing, but I'm human. I think that as human beings, we all want to hold on to and fight for our earthly lives. I want to see my niece and nephew grow up. I want to outlive my parents so they don't have to face the pain of losing a child. I want to sit on the porch in my rocking chair next to my sister when we are in our 80's and gossip about people we know. I want to hold John's hand when it's his turn to be sick. I have a lot to live for, and I'm never giving up. I'll fight until I take my last breath. I've even joked with the doc that my last words will probably be, "...but I feel fine..." LOL. 

Neulasta

This time around in chemo, my oncologist prescribed Neulasta, which is a shot that is given within 24 hours of treatment. It helps build your white blood count so you can fight potential infections. I never had this before, even when I was at my very worst, but I trust that my doctor knows what he’s doing. He’s told me several times that in many cases, it’s not the cancer that kills the patient, it’s secondary stuff like infections. So I try to be very careful and take care of myself. If this shot gives me a boost, great! However, there is something about this shot that I want to post so any BC fighters out there who are also on Neulasta can have some comfort. Several days after the shot, my bones feel weird, almost electric. It’s hard to describe, but the bones in my upper and lower back, and sometimes my shoulders feel like they have a strong pulse. Just little things like going pee and pushing a little while you pee – something we all do, makes them pulse even more. It’s the weirdest feeling ever, definitely not cancer pain or typical muscle pain. It’s just different. I work in the office as much as I can because the routine really helps my sanity. On chemo days or the day after treatment, sometimes I’ll work from home when I’m feeling really tired. But this “electric bones” feeling sometimes lasts for several days and it’s frustrating because I have a hard time sitting still and focusing on my work.

 

Yesterday, I was in a lot of pain and trying to resist taking an opiate because I don’t want to take them and then drive. My husband works in the commonwealth attorney’s office, so getting a DUI for being high would probably embarrass John a little bit, LOL. A Tylenol or Advil takes the edge off, but I Googled it yesterday because I was just about to go nuts from the pain. I came across a BC blog where several women posted that they also had terrible bone pain after the shot, and that Claritin really helped. Apparently, something in the Neulasta has the same kind of effect as a histamine, so taking an antihistamine can counter the effects of pain. I always have Wal-Mart brand Claritin on hand, and sure enough a few hours after taking one, I started to feel better. I wanted to post this here because I don’t know who reads my blog, or how often. The blog gets a lot of hits, most of them probably accidental. But if I can help at least one other BC fighter/survivor, it’s totally worth putting all of my thoughts out here. If anyone is suffering from bone pain due to these shots, give Claritin a try. Since Claritin is a 24 hour pill, it takes a few hours to kick in, but knowing that relief is on the way is comforting. :o) Now keep in mind that I’m no doctor. I have an average intelligence and IQ, so everything I post out here is purely from my experiences with BC, treatment, etc. I’m sure a doctor, nurse, or pharmacist can tell you much more about the benefits and/or risks. I just think that when there is pain, you will try about anything to feel better. I know I would!

Living with Cancer or Dying of Cancer?

Before I was diagnosed, I assumed that any cancer diagnosis was a death sentence, even when the cancer was caught early. I was convinced that no matter what, it would eventually rage out of control and kill the person that had it. If I got money for every time I heard one of my grandparents say, “So and so is dying of cancer…” I would be rich enough to retire.  I always hated hearing stories like that, and worded in that way.

 After I was diagnosed, it took several months to adjust to all of the change. I remember the day I was told that I hadn’t caught the cancer in time, I was devastated. In fact,  I think the first words out of my mouth were “oh shit I’m going to die…” At the checkout desk, I was waiting for the receptionist to make an appointment for an MRI scan on my head. One of the bone tumors was on my skull, so they had to make sure I didn’t have disease in my brain. I saw a magazine titled, “Living with Cancer” and all I could think was, “I don’t want to live with cancer!” I just wanted to run away.

Today, I still have moments when I just want to pull the covers over my head, take a Xanax and forget my troubles for awhile. But most of the time, I would definitely say that I’m living with cancer.  I've felt like I was dying a few times, but I never said it out loud. I guess I was too scared to even think it, much less say it or write it down. Sometimes I fantasize that the doctor will come in to the exam room one day with a baffled look on his face and say, “I just don’t get it, but there is no evidence of metastatic disease…” I believe this can and will happen if it’s part of God’s perfect plan. Only He can give me total healing, but that may not be part of His perfect plan. I just have to keep praying, and never give up.

I got my scan results on Wednesday (1/23). The news wasn’t great, but it wasn’t terrible either. Good news first: organs are still clear and healthy. Not so great news: my bone mets are the same and I have a teeny tiny new met in my lumbar spine. The doc thinks that it has probably been there all along, but maybe the scan didn’t see it last time. I don’t have any new pain, which is great. Since the new met is so tiny, the doc is going to keep me on the same chemo for now. So no break yet. The scan also showed bone loss in my right hip! So I have to be careful because I’m at a higher risk for fractures. I sure don’t want to break my right hip after everything my left hip has been through. To add icing to the cake, when I got to the chemo room, I found out the blood work showed that my platelets were too low to have chemo. I’ve never had to skip a treatment so it was scary to hear that after all this time.

While I am thankful that once again, my organs are healthy, I am pretty disappointed and scared that my bones just don’t want to get better. All of the mets are in my spine/lumbar area, so what if I’m walking along and my back breaks or I end up paralyzed?? It also scares me that I’m still struggling to get my left leg in shape while the possibility of my right hip breaking looms over my head. So I just have to take things one day at a time, sometimes one hour at a time. I’m going to keep exercising, but not too hard. I’m going to keep eating healthy and drinking lots, so my body can stay strong. Nobody seems to know what I can do to bring my platelets up on my own. I asked two nurses and there really isn’t any dietary thing I can do, although my husband took me out for a big steak Wednesday night to “build my blood.” I Googled it, thinking that the internet would have an answer for me. The only answer I found was “don’t do anything to make yourself bleed…” Really? That should be common sense LOL. I have no plans to go play in broken glass or use my husband’s table saw haha.

So I go back on Tuesday 1/29 for more blood work. If it’s all good, then I can have my treatment. I still feel very blessed and lucky to be here and I’m glad that I have a common cancer with a lot of treatment options. Some cancer patients only have one or two treatment options. Once those are used up, if the tumors don’t shrink, there isn’t much the docs can do. Every time I see my doctor, he emphasizes that I have lots of options. It always gives me comfort. I’ve joked with him several times that I would jump in a microwave if he thought it would shrink my tumors LOL.

My Cane - Friend and Foe

I got scanned on the 10^th and get results on the 23^rd. Hopefully, I’ll be posting a good update on that day. I’m more emotional at scan time and tend to be a little more defensive. It’s kinda like having PMS haha. My cane is a particularly sore spot for me. I’ve needed assistance walking for over three years now, and I’m used to being on a cane – probably a little too comfortable. I’m terrified of falling or straining my back by penguin walking. So as I build new muscles, I practice walking without my cane for short periods of time, and only around the house. It’s been a long difficult process and I’m working hard, but as the surgeon told me back in October, it’s going to take a long time for muscle to grow around the prosthesis. I’ve been asked questions about it, and I don’t mind talking about it. Generally, most people ask about my cane out of concern, and I appreciate that. I have a few versions of the story – they are all true, but I pick the version that’s most appropriate for the situation/person asking about it.  

·         Story 1: The easiest version - I broke my hip and had hip replacement surgery.

·         Story 2: The medium sized more detailed version that works when story 1 generates questions - I have breast cancer and it spread to my bones and broke my hip, so I had hip replacement surgery.

·         Story 3: Full blown blog style version with all the gory details for the people that really really want to know everything.

I’ve had a few experiences that have made me uncomfortable, such as people I don’t even know asking why I’m on the cane, and then they say stuff like, “Well you should be better by now! It’s been several months…” It’s very tempting to be rude and just say “Hey jerky, cancer ate part of my leg…” but I try to let it roll off my back and move on. The last time I was at the oncologist’s office, an older man sat down next to me and asked what the deal was. So I gave him story number 2. He proceeded to count the time on his fingers and said, “well you should be off that thing by now…” I didn’t know what to say, so I started looking at Facebook on my phone, hopefully giving off the vibe that I was done talking. I just wasn’t in the mood to explain or feel guilty because I’m still gimping around.

I used to put my foot in my mouth all the time. When I was working my way through college waiting tables, I waited on a lady about every other week and she had a cast on her leg from hip to toe. She acted very uncomfortable and needed help getting around. She was pretty young too. So one day, she came in without the cast. I rushed over to her and gushed about how happy I was for her that she finally got rid of that darn cast and commented that she must have had one heck of a fracture. She replied with “I didn’t break my leg, I had to have it amputated…” I was so embarrassed. That experience put the brakes on my big fat mouth for awhile. But what has really cured me of the foot in mouth disease is number one, spending over three years in management at a big company (that’s what I did before I moved to web design), and number two, having cancer. I really watch what I say to people now because you never know what a person is going through, and you have no idea how it feels until you are faced with it.

I do my exercises every morning and every night, seven days a week. It’s hard to be patient, especially when I hear stories about people much older than me having traditional hip replacements, and they are up moving around without assistance within a few months. I’m not minimizing their experience. I think any joint replacement surgery, whether it’s the result of disease or injury, stinks. I don’t wish it on anyone. I admit though, that I have moments of frustration. There are mornings when I wake up and don’t want to do my exercises, wondering what the point is. I make myself do it anyway though. Even though it’s taking a long time to build muscles in my hip, I guess the exercise is helping me in other ways too. Everything I’ve read about cancer and chemo recommends exercise.

I really do believe I’ll be able to walk without assistance someday soon. Me and John are going to Gatlinburg in April, so I’m really hoping I’ll be in good shape by then. I just have to keep pushing and keep praying.

Happy to be Alive!

Three years ago today, I received the scariest and most devastating news that I’ve ever heard. My oncologist called me with results regarding a CAT scan I’d had a few weeks earlier. I was in a wheelchair because of all the pain in my leg. It was cold and rainy that afternoon, and I remember it so well because we were having a new front door installed (we had to get it done before the end of ’09 so we would qualify for a special home improvement tax break lol). Anyway, my oncologist’s nurse called me around 12:30 that afternoon and said they wanted to talk to me in person. I told her that we would try our best, but we were having a new door put in and it might take awhile. So she made the appointment for 3:30 and the Champion guys were done by around 2. I knew the news was bad. I started crying and praying as soon as I hung up the phone, begging God to give me strength to handle whatever the doc had to say. I was in so much pain that I couldn’t take the two steps down into our garage to get in the car, so I scooted down the steps on my butt. John wheeled me in my chair for the rest of it.

When we got to the doctor’s office, they took us back almost immediately, and my doctor came in to the exam room to deliver the news. He started with “unfortunately…” and put his hand on my shoulder. I just took a deep breath and listened as he told me and John about how the chemo wasn’t working and the CAT scan had detected several lesions on my liver. Me and John just looked at each other, stunned. I was too scared and too surprised to cry. I was just so sure that the chemo was working. My doctor ordered an x-ray on my leg to see if the radiation had helped at all, and to ensure I didn’t have a fracture, so I could start physical therapy. Over in the Radiology department at the hospital, it was dead. After all, it was 4:00 PM on New Year’s Eve. While everyone was off making big party plans, me and John sat alone in the waiting area, quietly wiping tears, trying to hold it together. The x-ray technician had to lift me out of my wheelchair and hold me on the table because I literally could not move my lower body. He told me to hang in there and as long as I didn’t have disease in my liver, I would be fine. “You will do great as long as it’s not in your liver; anywhere but your liver…” he said. Then I told him that I had found out an hour earlier that it was in my liver. He said, “Oh, well you will still be fine, I just know it.” He was embarrassed for putting his foot in his mouth, and I was kind to him. He didn’t mean it badly. In addition to that, he had been carrying my 150 pound ass all over the exam room, so I had to cut him a little slack. On the way home, I said something like, “well this is it, this is how I’m going to die…” but John never accepted that. He just told me I was going to make it. I think he said it 2-3 times during the ride home. Maybe he was trying to convince himself.

When we got home, all I wanted was to watch something mindless and funny on television, and have a double cheeseburger from Burger King. I was afraid to eat onion rings because they always give me indigestion, and I knew that my mind would trick me into thinking those tumors on my liver were the cause. After we ate, I had to call my sister because I knew she would be wondering what was going on. She had been at work all day and I was off (I was working from home, but had vacation time that day). John went into the office bedroom because he couldn’t stand to hear the conversation between me and Cat.  As soon as I heard her voice I started crying really hard and she knew. We cried together and she agreed to break the news to our parents. I just couldn’t do it. I wasn’t even sure how I would be able to look at my parents without crying, much less be able to tell them the awful news. After me and Cat got off the phone, I cried really hard for about a half hour, then I called for John to come back into the living room so we could watch something funny. We flipped channels and found “Paul Blart - Mall Cop” on one of the movie channels. Normally, movies like that don’t do much for me, but it was just what both of us needed. We laughed throughout the whole movie. I was still scared and worried, but for an hour and a half, it was nice to laugh and think about something else.

Today, three years later, my life is so different. I’ve had lots of ups and downs since then. But today, I’m up walking around – no scooting down steps on my butt LOL. I’m working in the office instead of at home, propped up in bed. As of October 24, my liver is still clear of tumors (next scan is at the end of January). I spent this afternoon cuddling on the couch with my pup, helping John install a window sill in one on our bathrooms, and eating a great homemade Indian meal that John made after he finished the window work. Now we are watching the Twilight Zone marathon on the Sci Fi channel and my mind is much more at ease. I still get really scared, but three years ago, I didn’t think I would live to see another New Years Eve, much less three more New Year’s Eves!! To be honest, this post is hard to write, because thinking about how things were three years ago still scares me to death. Sometimes it’s hard to believe it even happened. It’s like something you read in a book or see in a movie.  But I need to think of how awful things were, so when I have a self pity moment,  I’ll remember  how great my life really is now.

Merry Christmas and Happy New Year!

My last entry was angry and full of self pity. In moments of weakness, it's easy to forget how blessed I really am. I experienced some really nice blessings during the holiday weekend. My Christmas with John and my family was wonderful. I'm thrilled that I'm here to celebrate another holiday and that my body feels strong enough to enjoy two of my favorite things: shopping and baking! We also went to the Christmas Eve candlelight service at church and it was so nice.
 
I went back to work yesterday after having a few days off. I learned that one of my contacts at our headquarters office died suddenly over the weekend. I never got to meet her face to face, but we spoke on the phone and emailed frequently regarding work projects. In fact, I just talked to her last week. I knew that she had been sick and recently had surgery, although she was back to work and recovering. Hearing this news made me very sad, and her family is in my prayers. But it also reminded me that none of us is guaranteed tomorrow. Three years ago, I could barely celebrate Christmas because I was in so much pain. It was all I could do to put on my wig and makeup and pretend to feel good so I wouldn't disappoint or scare my niece and nephew. Now, I'm working in the office every day, going to church, shopping, cooking/baking, and hosting my family at my house for the holidays. I'm so thankful for all of these things.
 
One of my Facebook friends posted something really cool and I’m going to do it in 2013. On January 1, you take an empty jar or container, and put in little notes about good things that happen throughout the year. Then on New Year’s Eve, you empty it and read all the little notes. I think that sounds really awesome. I’m going to make sure to date each note that I write too. What a wonderful way to truly count your blessings!