More Trouble But a Good Learning Experience

For the past few weeks, I’ve been battling what I thought was a minor chest cold. I had no fever, no weakness, or any other drama. So I let my onco know about it and self-medicated. As time went by, I lost my voice, couldn’t walk anywhere without getting winded, and struggled to keep an appetite and drink plenty of water. During the last two weeks of October, I was calling my doc to get some prescription meds – cough syrup with codeine, antibiotics, and a rescue inhaler. He gave me the drugs, but also ordered a chest x-ray. The x-ray showed some congestion and fluid, but nothing alarming. He also delayed my chemo since I was feeling weak.

By Wednesday 10/30, I could barely get my breath. My onco was filling in at another onco office, so the nurse practitioner ordered another chest x-ray. This showed a significant amount of fluid on my chest. In addition to that, since I was struggling with my appetite and wasn’t eating much, my hemoglobin had fallen to 6.5. The NP scheduled a procedure in radiology which the docs would find the most dense source of fluid in my chest by using an ultrasound on my back. Then they would insert a straw-like tool and withdraw the fluid. In the meantime I went to the cancer center to get two units of blood.

I have to say that this was the scariest day of my life, even more scary than when I found out I had cancer, and it had spread. I’ve never had breathing issues before. I’ve had about 5 chest colds in my life, usually cured by over the counter meds. This is the first time in my life that I was struggling, literally fighting to get a breath of air. The fluid withdrawing procedure could not be done until Thursday the 31^st because the radiology team was so backed up doing the same procedure for so many other people. To make me more comfortable, the nurse practitioner set me up with a local medical supplier so I could have oxygen at home. As I sat at home, watching the supplier bring in tanks, tubing, and a big central unit for our living room, I got tears in my eyes. I was afraid to cry because I just didn’t have the wind for a good cry. I looked up at John and said, “Well this is it…I’ve seen it a hundred times, home health comes in to deliver supplies, the patient goes on oxygen, gets weaker and weaker and just dies. I’m going to die this time…”  John held my hand and told me to try to hang on.

The next day, my sister Cat came over to help me get ready and take me to my procedure. I was so scared because what if it hurt, or what if it didn’t work? What if there was some other freaky complication? Thankfully, the procedure went perfectly. It wasn’t painful, just a little uncomfortable. It only took about a half hour. They removed 1.5 liters of fluid from my chest. It was in between my chest wall and right lung, completely compressing the lung. I coughed as the lung re-inflated itself, but thank God there were no tears or other damage. My relief was so immediate that I didn’t need my oxygen as we left the hospital. I was in my wheelchair, but it was nice to breathe on my own.

This is another interesting chapter in my battle. I had just told someone at work a few months ago that even though I had some spots on my lungs, at least I wasn’t having trouble breathing. Well, now I know how it feels, and what to expect if I need to have fluid removed again. Plus, it adds to my testimony even more. Knowing exactly how it feels to struggle for air will help me support other people that struggle. Cancer, chemo, and other treatment isn’t supposed to be easy, and I went a long time without experiencing much pain (other than my leg) and side effects. Having these other complications makes me feel even more thankful to be here. One day at a time, sometimes one hour at a time is the only way to live.

Super Duper Extra Bad News

I'm not sure how many times I can title these blog entries "Bad News" "More Bad News" and so on. So, since I'm worse than ever before, I'm titling this one appropriately. Last Thursday, my onco went over my scan results with me, and once again, the disease is spreading. My liver and lungs are worse, I have some lymph nodes involved in my abdominal area, I have a little fluid around my heart, and my liver is slightly enlarged. Oh, and my hemoglobin fell to 7.5. So right after our appointment, I went to the cancer center for two units of blood, and to start a new chemo drug (Halaven).

Yes, I'm definitely upset and scared. But it's kinda weird because I've felt pretty calm this week, overall. I'm in some pain, but not as much as I thought I would be, considering how much disease I have in my body. I had an explosive cry Thursday when I got home safely and had the house to myself. I took Friday off from work because I just wasn't ready to face anyone or talk about it yet. The chemo made me feel nauseated the day after treatment, but by the weekend, I was craving good food again. The two pints of blood also put some pep in my step.

So here's how it's going to go. I had one treatment last week, I get one tomorrow, and I will have next week off, then start all over. I still do not plan on giving up, period. God is in control and His plan and timing are perfect. His plan may be to bring me home to be with Him and my loved ones may never understand why. Then again, he may take me all the way to edge, and then pull me back. I'm going to keep praying for peace, comfort, and miracles.

To anyone who is reading, this is extremely important. You will never see a "farewell" message from me on the blog. I will fight until I take my last breath. If I die, don't ever say that I "lost" my battle with breast cancer, and don't let anyone else say it. I win, no matter what. If I live, I get to see my niece and nephew grow up and I'll do whatever God wants me to do, wherever He wants me to do it. If I die, I will be in my Heavenly home, at peace with no pain and no cane! Just keep on praying.

Hair!!

My husband is enjoying the iPod Touch I got him for his birthday several months ago, and I can always tell when he’s downloading music. It’s usually pretty loud in the office bedroom, and I always get cracked up listening to him sing along to all of the music. A few weeks ago, he was downloading stuff from the Hair soundtrack and it made me think of hair in general.

My hair hasn’t been longer than a few inches in almost four years. Overall, I really don’t mind, because I can wash my wig at night, then put it on in the morning, run a comb through it, and be good to go in about a minute or less. My current wig has gotten a lot of compliments and I appreciate that. It makes me feel good to look somewhat normal, despite everything that’s going on. I still have hang-ups about it though. Last year, they took new photo ID pictures at work and I wouldn’t let them take my picture. The picture on my ID is pre-sick Amy, and I had a fresh from the hairdresser style. I hate having my picture made anyway, so I don’t really have a lot of pictures of me with that style and color. So when I miss the old me, I look at that photo ID for a few seconds and try to remember what it was like to be healthy. I won’t even change my driver’s license picture. I just renew my license online and keep the old picture from 2005.

Vanity always finds ways to creep in and make me feel bad about myself. I’ve never been beautiful, but before I got sick when I put some effort into it, I could look nice. Now, I have to put a LOT of effort into it, and I still hobble around like a 95 year old woman. Now the statement I’m getting ready to write may make people mad, but I don’t mean it in an ugly way. I don’t ever wish for anyone to be sick or to suffer. But I do believe that every woman should experience losing her hair at least once. Losing my hair really changed me. I used to be so obsessed with my cut and color, and I went every six weeks, no matter what. I spent over a hundred dollars on a CHI flat iron and special flat iron hairspray so I could spend a half hour every morning straightening my supposed “frizzy” hair. I bought special shampoos and styling gels/sprays and kept styling products in my car, desk, and purse, just in case I needed a touch up. But you know what? With all of that grooming, I rarely got compliments on my hair. My wig has gotten many more compliments over the past year than my real hair received during a lifetime.

Please take my word for it. It’s just hair. It will grow back, no matter what you do to it. Cut it off, shave it off, dye it blue, who cares? In the grand scheme of things, who gives a shit, right? I'm willing to bet money that some people might not even notice LOL.

More Bad News

I’ve been trying to find the right words for this post for a week, but they aren’t coming to me. So I’m just going to write. Last Thursday (8/1) I got results from my 7/29 scan. Again, the news is bad. My liver is worse and now I have a spot on my lung. I knew the news would be bad because I was supposed to have chemo on Tuesday 7/30 but they called me and told me not to come. They told me that my onco wanted to talk to me and then I could just have chemo after that. Well, I’ve gotten phone calls like that before. Once, it was good news and I got a 3 month chemo break. But the other times, it’s been bad, “unfortunately…” types of appointments. In addition to that, my blood counts have suffered over the past few months, particularly my hemoglobin. It got so low a few weeks ago that I needed two units of blood. My onco mentioned that if my counts continue to suffer, I may need a bone marrow biopsy. Having so many chemo drugs for so long could have caused me to develop a type of blood cancer.

I’m not going to sugar coat this. I’m upset and I’m worried. One good thing is that my doctor is optimistic as always. He even made me laugh after we discussed the scan results. So while the news was terrible, I left the office with a smile and ready to start my new chemo drugs (Taxotere and Carboplatin). My doctor and the nurses at the cancer center say that these two drugs together really pack a punch, so hopefully, this combo will be the one.  This treatment will be given every three weeks instead of weekly, so that makes me happy. I’ve only had one treatment, but so far so good. My main complaint is gas and indigestion, but I can take over the counter Digel and Zantac, and so far it’s helping. Two days after treatment, me and John drove up to Blacksburg for my dog’s physical therapy and I did fine. That’s another thing – our beloved shih tzu Peyton had a herniated disk and woke up one morning with all four limbs paralyzed, so he had surgery at Va Tech in Blacksburg, about 100 miles from here. So yes, it’s been a stressful, scary, awful month not just for my health, but I’ve worried about my pup too. Peyton is my little shadow so it’s been weird not having him follow me around. He’s making progress every day though, so I’m hoping he will be back to his old self soon.

I haven’t had an explosive cry yet. I had a mini cry in the shower the night that I got the news, but no big blow up yet. Usually the first thing I do when I get home after terrible news is play Led Zeppelin’s “Whole Lotta Love” as loud as I can stand it and cry really hard for about a half hour. I have no idea why I picked “Whole Lotta Love” it just happened once, and then it became a tradition. I’m sure my neighbors really hate it too because my closest neighbors are elderly, and I’m willing to bet they don’t like Led Zeppelin.

Here is a bright spot for this post. The first thing I thought when I left the onco office Thursday was “hmm, now my chemo will be on Thursday so I’ll meet all new people and I bet there is a huge blessing coming my way…” I didn’t think I would experience a blessing on my very first day but I did! The nurse assigned to me said that the lady in the cube next to me was not sick, but with a sick friend getting chemo. However, the healthy lady had stage iv ovarian cancer six years earlier and had been on the same kind of drugs that I was getting ready to start. Today she is clean! That is pretty amazing, considering that stage iv ovarian cancer is so mean. Well, the lady came over and talked to me about it and it was wonderful to hear her prospective and positive story. In addition to her ovarian cancer struggle, she had a story about either a relative or close friend (I was high on benedryl so I can’t remember) that had stage iv breast cancer in her bones, liver, and brain. She is also clean now. I was blown away that on my very first day of new treatment on a new day, I met this amazing woman with such uplifting stories. Maybe that’s why I haven’t had an explosive cry yet. I just can’t feel sorry for myself after receiving a huge blessing on such a rough day.

I’m thankful that I’m still able to work and feel pretty decent. I’m never giving up. I asked my onco if he would ever give up on me and he promised he wouldn’t. So I pray every day, sometimes many times a day that God bless my body and bless my doctor. I also ask that God bless the meds as they go into my body because without God’s blessing, the meds are worthless. I hope that my next treatment experience is just as good as the first one. I know God’s plan is perfect and I ask Him every day to lead me in the right direction. I want to be a better Christian and do God’s work, sick or well. Maybe right now, I can do better work for Him as a sick person. Maybe there are still people out there that I’m meant to meet, and the only way to cross paths with them is being sick. I still pray for total healing though. I still dream of going to nursing school so I can give back to everyone that has helped me, but frankly, I believe I need to be healthy for that. Juggling a full time job and a busy personal life is demanding enough. I don’t think I need to add school to it until I’m strong again. I believe that I will be strong and healthy again someday. Only God can heal me, and God is stronger than cancer, and smarter than science.

It's Only Breast Cancer

This post may get a little rough so you have been warned. I get tired of people assuming that just because breast cancer is common and gets tons of attention, research and funding, that everything will be okay. Recently, I’ve even seen posts in social media that focus on more rare cancers, and some of them have taken jabs at pink or pink ribbons. I can only speak for myself on this, but after almost 4 years of battling this evil disease, I can say without a doubt that there is nothing easy about this experience. I could easily bullet point everything that I’ve been through but it would take up a lot of space, so I’ll spare the readers. But just because BC has tons of treatment options (and I’m thankful for that) it doesn’t mean that the options are easy, or that they will even work. I put on a strong face because frankly, it makes me feel better to try to be as normal as possible. But under the wig, makeup and stuffed bras, I’m disabled, not too attractive, and in pain. The barbaric mastectomy doesn’t end breast cancer when the disease is already metastatic. I have the disease in my liver and bones and I feel some pain somewhere on my body (sometimes in several areas) every single day. If science has its way, I will die. Generally, people with metastatic BC live between 2-3 years, so the fact that I’m still here is a miracle that I praise God for every day, sometimes many times a day.

I’ll be honest. When I was first diagnosed, I thought that it would be easy. Lots of celebs have had it and did fine. I figured I would have the mastectomy, get a little chemo, wear a pink baseball hat for a few months while I got my hair back, and then get on with my life. I never imagined that I would be sitting here writing this, almost 200 chemo treatments later, with hair that hasn’t been more than an inch long in three and a half years, walking with a cane after two hip surgeries… but I said I wasn’t going to bullet point my woes, so I’ll stop. My previous blog entries have detailed my challenges so people that are reading know what’s going on.

I think that whether you have breast cancer or cancer of the pinky toe, it’s important to remember that cancer is cancer. It’s all bad and scary, stage 0 to stage 4. There is really no need to blast one cancer to boost your spirits about your own battle. We all need to pray that God bless the doctors and scientists looking for new treatments and a cure. Without God carrying me through this, I would either be dead or want to be dead. I can’t survive a single second without Him. I have a lot of weak moments and even jealous moments, particularly when I see people with horrible attitudes get completely better while I’m still struggling to keep my head above water. But I just keep praying, and I will pray about this, so I can let go of the anger, and replace it with positivity.

High Anxiety

I used to make fun of anxiety issues. I’ve always been an anxious person, even when I was a little kid, but I learned early how to hide it away and act like stuff didn’t bother me. I always took pride in giving off the appearance that things roll off my back. But the truth is, not much of anything rolls off my back. I let stuff bother me and I rarely forget things that have been said and done, past and present. It’s not that I hold grudges. It’s more like me beating myself up, wondering, “what could I have done to make that situation better so it would have worked out differently?” or “what did I do wrong here?”

I can’t help but think that a lot of internalizing and worrying contributed to my illness. After all, “they” say that stress is a huge contributor to any illness.  When I was diagnosed, I couldn’t help but wonder what I had done wrong to get this disease, and why didn’t I find the lump sooner? My general doctor pretty much said it was dumb luck, and my onco says that I got it because I got it. It’s just one of those things.

On May 7 I found out that the disease is the worst it’s ever been, with a lime-sized tumor on my liver, and new bone mets in my spine and lumbar. My tumor marker soared to 1075. My onco started me on a new drug the same day (Navelbine) but I still have to wait and see if it’s going to help me. I get the treatment every week for 3 weeks, then I get a week off. I just completed my second cycle of it Tuesday (6 treatments total so far). They checked my tumor marker and I found out Tuesday 6/18 that it’s down to 1027 – the count was taken from my blood work done right before my 5^th treatment on Tuesday 6/11. That’s not much of a decrease, BUT it’s a decrease and that gives me hope that I’m going in the right direction. Honestly after only 4 treatments, to see an almost 50 point drop makes me feel pretty good. I won’t get scanned again until the end of July (I get a CAT scan of the chest, abdomen and pelvis every three months). My doctor was worried that the small drop would make me more anxious, but I told him that I would take any piece of encouragement I could get, not matter how small.

The time between May 7 and now has been tough regarding anxiety. I’ve prayed a lot for peace, and God has blessed me with comfort and hope during this time. However, panicky moments creep in. When I think about the size of the tumor on my liver, it scares me to death. I keep waiting for the other shoe to drop – am I going to start hurting? Surely a tumor that size would cause some kind of discomfort. Am I going to wake up one morning and have yellow skin and nails because my liver is failing? What’s going to happen?? Then there is bone pain to contend with. For a few days, my other leg started hurting, and all I could think about was the hell I went through with my left leg, and I wondered if I would have to do it all over again with my right leg too. It must have been weather related or a just a fluke, because praise God, it’s not hurting anymore. Sometimes I have a sense that something is “there” on my right side, where my liver is. It’s not pain, just an awareness that something is there. But when I press my side, I can’t feel anything. No pain, no lumps, no bloating, so I can’t help but wonder if that’s my anxiety making me feel a presence there. I pray every day (sometimes many times a day) that God protect me from abdominal/side pain and that I can still eat good. I love to eat, but there are times when my anxiety gets bad, and my mouth and throat dry up like a desert, making it hard to eat and swallow. There have been days over the past month when I’ve had to force myself to eat, gagging after every bite, not because I’m in pain or nauseated, but I’m too anxious to sit still and eat. I’ve prayed for a growling stomach and some peace so I can eat, and sure enough, within the hour, my stomach will growl and I’m able to eat a decent meal. God is always here, carrying me through it.

I’m still determined to beat this if it’s God’s will. I pray for strength, comfort, and healing every day, many times a day. I don’t want to be another statistic. So many stage iv metastatic cancer fighters do well for awhile, and then they get bad again, then worse, and then they die. I lost a friend a few months ago to this horrible disease and she was only 48. I want God to lead me wherever he wants me to go, whenever he wants me to go, sick or well, so I can help other people through this. The one thing I needed so badly when I was first diagnosed was other stage iv metastatic cancer fighters around to say, “I’m making it through this and you can too, with God’s help.” I know one other fighter who has BC with similar metastases, and she’s struggling pretty badly right now. She’s getting ready to go through some risky treatment, dangerous enough to require an overnight hospital stay after each chemo. I’m praying for her every day, sometimes 2-3 times a day. I’m sure she’s really worried and scared.

My dream is to be healed so I can go to nursing school. I want to become an RN, specializing in oncology so I can hold the hands of the sick, and hopefully give them some comfort and hope. I pray that God lead me in the right direction so I can give back to all of nurses that have helped me. My doctors have been awesome, but it’s the nurses that do a lot of the “dirty work” and comforting. Every nurse I’ve had interactions with since I’ve been sick has been gentle, positive, and kind. That means a lot when you feel scared and lost.

I don’t laugh off anxiety anymore. It’s real and it’s scary. I’m not ashamed to admit that I’m afraid and that I worry about stuff, and I am not an actor anymore. When I’m tired, I’m tired. When I’m scared, I’m scared. I need my energy to fight disease, not to act like everything is okay all the time. This disease has brought me to my knees – figuratively. I can't physically get on my knees right now haha. I’ve never been so scared in my life. If you have a loved one fighting anxiety for whatever reason, please be patient with them, and pray for them.

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!

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.