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!