You Look Great!

I’ve read articles about what NOT to say to cancer patients. Each article I’ve read always has this phrase in the “what NOT to say” column: “You don’t even look sick, you look great!”  Maybe there is something about the tone. Maybe if someone says it in a negative or hateful way, then that would definitely be inappropriate. But I’m just going to be totally honest here. I LOVE hearing it when someone tells me I look great or that I look healthy. If that’s how you really feel when you see me, I want to hear it and you can tell me a hundred times LOL. I promise will love it just as much after the hundredth time as I did the first time you said it. :o)

Speaking of what NOT to say, here is my list of phrases:

-You look pale
-You look too thin
-Chemo is as bad as the cancer
-I drank a special tea and now I’m cancer free
-Cancer is a money maker and “they” are hiding the cure from us!
-Why are you still using a cane?
-You have the best kind of cancer
-At least you don’t have [insert any other kind of disease or ailment here]
-You’re doing better than I am!
-I’ve had the same kind of chemo you’re taking and it didn’t work
-Did the doctor say how long you had to live?
-I hate [insert doctor’s name, hospital name here]; they let my [insert speaker’s family member/friend name here] die

I guess it just depends on the person and the kind of personality they have. Some people don’t want to hear any of it, and others need a lot of encouragement. What helps me the most is when people tell me they are praying for me. And again, I like looking good LOL.  Some of the people I’m in treatment with look really pitiful. I’m not saying I look like a model for good health, but at least I’m up and moving around, with some energy. I’m very thankful for that.

Quitters Never Win and Winners Never Quit

When I was a kid, I had a pretty short attention span. I had plenty of interests but when the work got too tough, I would quit and move on to the next interest. In 2^nd grade, I joined the Brownies because my sister was a Girl Scout and I loved her troop leader. My troop leader wasn’t as nice as Cat’s so I quit. In 5^th grade, I joined a little league baseball team. The first time I got hit with a ball, I quit. In 6^th grade, I joined the band and played the flute. I loved it and was pretty good at it, but the following year, we started marching, and I stunk. That was the end of the band. In the 7^th grade, I was placed in an advanced math class, but by 8^th grade, I was afraid it would be too hard, so I went back to the regular math classes. In 9^th grade, I ran track because I was dying to have a letterman’s jacket. As soon as I earned the jacket, I quit the team.

By the time I graduated high school, I didn’t really know what I wanted to do. I wanted to be an actress, but deep down, I knew that was just a silly fantasy that would never pan out. Shortly after graduation, I met my first boyfriend. He was attending the local college, so I decided to give it a try too. I’m no genius, and never claimed to be one. I hadn’t even taken my SATs, so I had to hurry up and take them in November so I could start college the following January. When I started going to college, I fell in love with the structure and routine. It was like someone had flipped a switch inside of me, and I vowed right then and there that no matter how tough things got, I would stick with it and finish. I didn’t want to add college to my quit list. Thankfully, I did stick with it. I added a busy class-packed minor to my course load late in my college career, so I took 5 years to finish, but I had a blast.

I couldn’t find a job in my field, so I started working at OfficeMax about 5 months after finishing school. I started in customer service and over the years, worked my way up through the ranks. In 2003, my dream position became available so I applied and I got it. I’ve been in the same position ever since. I won’t lie – in the 16 years I’ve been with the company, I’ve had a lot of ups and downs and believe me, I’ve been tempted to quit a few times. I actually did quit for 2 weeks in 1999 to work in an “elite private school” that turned out to be a glorified daycare center, so I quickly got my old job with OfficeMax back LOL. Other than that, I’ve stuck with it through the highs and lows.

Three and a half years ago, if anyone had told me that I would be facing a life-threatening illness, I wouldn’t have believed it or thought that I would be able to handle it. When I started getting one bad medical report after another, I was scared and overwhelmed. I wanted to cover my ears and just run away, but I knew I couldn’t do that. I had two choices: stand up and fight against it, or quit and die. So I chose to fight. Last week in chemo, I sat next to a patient that could barely move because she was in so much pain. But she uttered these words as she struggled to get up to go to the bathroom: “Quitters never win and winners never quit…” I had just gotten some really crappy news and was already fighting back tears, but to hear this very sickly woman say these words made my heart swell up and feel so encouraged. She’s right. You have to keep on pushing, even if it’s just to get up to go pee!

Bad News

Well it’s my birthday and I made it to 40, whoo hoo! I don’t mind getting older. In fact, I’m super thankful to be here. On Tuesday 5/7, my oncologist gave me an unwanted birthday present. The disease is worse than ever. Not only are the mets in my back worse, I have new ones in my back (spine, lumbar, sacrum) and I have tumors in my liver again! Dang.

It’s pretty scary to have so much new growth while I’m in weekly treatment. I always felt so safe while I was in weekly treatment. But every single patient is unique and everyone reacts to the various drugs differently. Some of them work beautifully. Apparently, other drugs have about as much effectiveness as running saline through your veins LOL. So my doc started me on a different drug right away. He gave me great comfort by telling me that while he knew the results days before I came in on Tuesday, it provided him with time to research what drug he wanted to use, and to get the pre-authorization from my insurance. That way, he could give me the news and then say, “…But I have another drug that we are going to start TODAY…” No waiting for them to think about it or get pre-authorization from Blue Cross.

I’m not going to lie or pretend that everything is fabulous. I am scared shitless. I have three pretty good sized tumors on my liver, the biggest one being 7cm. Having tumors up and down my spine also scares the crap out of me because I’m trying to get mobile, and I’m scared I’m going to break something or hurt myself some other way.

When I get too scared, I try to remember that God’s plan and timing are perfect, no matter what. God’s perfect plan may be to bring me home to be with Him. Then again, this all may be happening to make my testimony stronger. Last Sunday, my pastor preached about always being prepared to talk about why your faith in God is strong, and to be ready to give your testimony (1 Peter 3:15). The miracles that I’ve experienced during my cancer battle have been wonderful and I’ve just been in awe of what God has done for me. I don’t mean to sound dramatic, but I shouldn’t be here. As bad as the disease was 3 years ago, I didn’t think I would make it a year, much less make it to 40! Science was not, and is still not on my side, but God is in control. If it’s part of His perfect will that I make it through this battle, He can heal me with the touch of His fingertip. For the most part, I feel at peace. I’m still not going to stop fighting, ever! But when I get scared, I try to remember one of my favorite scriptures: Philippians 4:6 – Don’t worry about anything; instead, pray about everything. Tell God what you need, and thank Him for all He has done.

For those of you that are still reading, just keep on praying!

I Haven’t Got Time for the Pain

My leg doesn’t hurt anymore, but I do suffer from back pain – sometimes it’s the cancer, sometimes it’s side effects from my meds. Pain really annoys me for two reasons. One reason is obvious – it hurts. The other reason is I don’t have time to stop and hurt. Life is good and I have stuff to do. I hate times when I’m in pain because it reminds me that I’m sick and sometimes I’m literally curled up, groaning to myself like a cancer patient. I hate that crap. Last Thursday, I was really feeling the effects from my chemo. The bones in my back ached and throbbed like I had the flu. It wasn’t typical hammer and chisel cancer pain, just a general achiness that wouldn’t let up. I was also running a low grade fever, which oddly, is another side effect of the chemo drug I’m on now. I started getting really scared because me and John had a long weekend planned in Gatlinburg to celebrate our six-year anniversary, and we were leaving the next day. What if I was still in pain or running an even higher fever when I woke up Friday morning?

Thursday night was definitely one of the worst nights I’ve had since I was first diagnosed. I tossed and turned all night, had nightmares, and woke up several times soaked in sweat, panicking. I had also taken some extra drugs, so I was high and out of it, which made me feel trapped in my body. My mind could not process exactly how I felt and I could barely utter a coherent prayer. So I asked God to get me through it and to bless my body.  

Friday morning when I woke up, I was hung over from the drugs and still had a panicky scared feeling all over. BUT I wasn’t in pain. So I did what I do best - I made a nice strong pot of coffee. I calmly told John good morning and acted like I was okay. I did not want to scare him, although I did tell him that I had horrible nightmares all night. I sat on the couch and had two big mugs of coffee and gradually, I started feeling better. I prayed as I sipped the coffee and flipped channels. I settled on the original 1980 version of the movie Friday the 13^th, and it was fun to just sit and watch something stupid for awhile.

After the coffee kicked in, I packed my stuff for the weekend and put on some makeup. John also started getting ready. We got the automatic feeder/waterer for the cat, and packed up the dog’s stuff so we could take him to my parent’s house. Once we were on the road, away from hectic pet readying and on our way to our romantic getaway, a peace washed over me. I prayed as I drove that God would get us to our hotel safely and to please keep the pain away so both me and John could really enjoy our weekend.

This is no exaggeration – our weekend was perfect. The hotel was great, all of the restaurants we ate at were wonderful, and I walked everywhere with ZERO pain. Of course, I needed my cane because I walk like a penguin without it, but I had no back pain at all. For the whole weekend, it was like I didn’t even have cancer. Everything was perfect.  I truly believe that God hears and answers all prayers. Sometimes He says no, but even when He says no, I try to remember that His timing and plan are perfect. I’m very happy and thankful that He said yes to my prayers for the weekend. Me and John desperately needed a getaway and we both had a great time.

Our long weekend made me realize that I’m capable of more than I thought. So beginning Monday night (4/15), we walked around our block, and plan to do it every night. So far, we are just going around once – I think it’s about 1/3 of a mile. But we are gradually going to go longer and longer. I’m still doing my elliptical every morning to get the blood flowing, and to wake me up. The ortho surgeon told me back in October that my prosthesis is the most complicated one he does, and muscles don’t like to grow around it. Unfortunately the cancer did so much damage, I could not have the basic hip prosthesis. That, coupled with being in weekly chemo makes muscle building difficult, so I have to keep pushing myself. I’m not ever giving up and I will be able to walk without assistance someday. The surgeon must have picked up on some spunk or spirit in me, or whatever you want to call it, because he said that if anyone could do it, I could do it. After all, I walked around with a dislocated fragment of a hip with metal hardware poking through it for many months. I’m determined and persistent to the point of being annoying. I’ve warned all of my docs about this so they can schedule themselves a cocktail hour after seeing me LOL. I’m praying all the time that God wrap His arms around me and protect me as I try to get stronger and build some endurance. Having more mobility and a little independence back would really help increase my life quality.

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!