Saturday, February 26, 2011

Maliaphobia (Fear of Wigs)

We almost always go to the same grocery store near our house so I have rapport with most of the check-out staff. A lot of times if we’re just running to the grocery store I’ll throw a hat on. But we had been performing some other errands prior to going to the store, so I was wearing the new wig.

The girl at the checkout kept looking at me and finally she asked me “Is your hair different?” I smiled and responded “Yes, it is very different.” She said “I can’t remember what your hair looked like before, but wasn’t it shorter?” This has happened before. Not the exact conversation, but twice a situation has occurred in which I had to decide whether to go with it and just pretend it was my hair, or fess up and tell the person it’s a wig. I ended up spilling the beans and just briefly told her that I’m receiving chemo and that it was a wig. She was uncomfortable for a moment, and I felt bad to put her in that situation. But she was very nice about it and mentioned that her aunt had recently gone through chemo and wore a wig, and that her Aunt sometimes still wears it to save time. After that we had a short conversation and both joked about it. I said it definitely saves me time in the morning, and she said she’d love to be able to get highlights that looked like my wig.

I still struggle with how much to share with people. Often I feel like I overshare. I forget that other people aren’t necessarily as comfortable about the situation. There are people I interact with that have a hard time looking at me with the wig on, and really never bring the “cancer” thing up. They just carry on as if everything is normal. I can completely understand that reaction and in no way hold it against anyone. People who know me well usually start by joking about and/or acknowledging the wig and then ask me how I’m doing. I also hear a lot of stories about friends and relatives with cancer. Note to all: I love to hear the survivor stories. They are inspiring. But please don’t mention the stories of those who lost their fight. At least not until I’ve kicked this thing completely.

Yesterday, I was walking through the office and saw a co-worker’s wife who was there for a TGIF (Happy Hour) that was being held. She mentioned that she has been reading my blog and asked about how I was doing. I was so surprised (in a good way) that her husband had gone home and told her about my situation and my blog, and was very touched that she was keeping up with my progress.

I am dragging today. I am finding that right around day 15 or 16 of the 21-day chemo cycle I always get really tired. It’s that tired you feel when you’re just starting to get a bug or the flu. You’re not really sick yet, but you are achy and just really want to rest. For some reason it catches me off guard nearly every time. I always think that late in the cycle I should be feeling better. My theory is that the white blood cell booster shot I receive just after chemotherapy probably wears off about this time, and my body has to start generating white blood cells on its own which takes additionally energy.

So I’m off to relax. I plan to eat a Cadbury egg, watch a little television, and then sleep for an insanely long period of time.

Thursday, February 24, 2011


Round number four of chemotherapy hasn’t been too bad after those first few days. In fact, I’ve been feeling pretty good this week. But I am currently so tired that I want to just fall over. The only reason I am still up this evening is that we just arrived home and the dogs need “unwind” time before we go to bed.

I’ve been working full days this week. It’s actually been a good week at work. In fact, I haven’t felt this good about a week of work since early fall before the diagnosis. In addition to work this week, I’ve had things to do each evening. But one more day and the weekend is here. And I will sleep like Rip Van Winkle.

On Tuesday night of this week we went by the Hickory Wine Shoppe. Downtown businesses in Hickory have been donating 10% of a day’s proceeds to a charity of their choice. The wine shop selected the Leukemia and Lymphoma society. It warmed my heart that they chose that as their charity. We had to go by to support them. Plus I needed to show Alan the new wig – he gave it two thumbs up!

Tonight was a wonderful evening. We were interviewing a candidate for a position at work and we went out for dinner after the interview. The food was amazing as was the company. Once I got in the car to come home, I immediately pulled off the wig. After 14 hours of having it on, I needed to get it off! My head needed to breathe desperately. Thank goodness it was dark.

Tomorrow morning I have to go in for my weekly blood work and then have a day filled with conference calls and meetings. This week’s shout-out goes to my co-worker Holly who has taken on a massive amount of work and work-related travel to make sure things at work are getting covered. I am glad she has a vacation coming up soon – she totally deserves some R&R.

I cannot say this with enough emphasis: TGIF (almost!)

Monday, February 21, 2011


I had sticker shock the first time I went wig shopping and couldn’t bring myself to buy more than one. Nice wigs are a bit more expensive than I anticipated. I was also nervous about the whole experience and didn’t even know how willing I would be to wear a wig.

But I have gotten used to the red wig, and have been longing for something a little different. My own hair has never been great. It’s very fine and mousy brown. So this is my opportunity to really have some really fabulous hair.

So this weekend I ventured back to the wig shop and picked out a new do. The hardest part was pulling off my wig to try on other wigs. I’ve never gone out in public bald. Maybe if my head were shiny bald, but it’s not. I have some hair that is growing, other areas where I’m bald, and a whole lot of in-between. Every chemotherapy cycle hair falls out. And sometimes it is just the fuzz, and other times it is the hair that is somehow trying to grow. So I look like an ostrich. So unveiling my head to the woman in the wig shop as well as anyone passing by was a big step for me.

But it was totally worth it, because now I have the hair I’ve always wanted. Except the bangs are driving me insane, so I may have to get a “wig cut”. I also need to pick up some wig hairspray so I can keep this baby under control. I went outside in the wind a bit ago, and came back inside looking pretty scary.

Who knows, I may never go back to real hair!

Sunday, February 20, 2011

Calabash Shrimp

Yesterday, Robbie’s parents were here visiting and we were all perplexed about what to do for dinner. No one wanted to make the decision. So I decided we’d try something new. There is a seafood place here in Hickory that prepares mainly fried seafood. But I was craving some fried clams, so I posted it up as a suggestion.

We arrived at the restaurant and there were plenty of cars in the parking lot. Robbie and I have a general rule that if you go to a restaurant at dinner-time and there are no cars, there is most likely a very good reason. So in those cases we would set a new course.

The restaurant ended up being not the cleanest of places, but it seemed to be doing a good business so we went ahead and stayed. The food was sort of what I expected – lots of fried seafood and hush puppies. It was good initially, but by the end of the meal, I had a bit of a greasy mouth feel. The batter was really heavy on everything.

Now let’s get to the part where you understand why I’m writing about this on my NH-Lymphoma blog. After extensive heartburn and reflux during the first round of chemotherapy, I started to take a daily dose of Prilosec or an equivalent type drug. Since starting that regimen I haven’t woken up in the middle-of-the-night with heartburn or acid indigestion. Unfortunately, I think the pills had given me a false sense of security that I could eat a plate of fried seafood without repercussion.

Last night, I had heartburn and reflux for a good hour or two. I was eating Tums like they were candy. It was a not so gentle reminder from my body that I do still have the red devil and all of her friends in my system.

Today, I will be more kind to my stomach.

Thursday, February 17, 2011

Dancing in the Sunflowers

Cancer is no longer shiny and new. It’s no longer a novelty. It’s no longer this exciting thing that has happened. It is now just part of my normal. It’s no longer “Holy cow, I have cancer!” It’s more like “Yeah, I have it. I’m dealing with it the best I can.”

The side effects of the chemotherapy remain the same this go-around. I picture myself in one of those bizarre prescription drug commercials. I am dancing in a field of sunflowers in a white dress for no apparent reason. In the background, Mr. Announcer Guy is saying “Side effects may include numb fingers, headache, diarrhea, bone pain, muscle pain, fatigue, rapid heart rate, constant coldness, paranoia, anxiety, twitchy eye, food aversion followed by extreme hunger, hangover feeling, hair loss, and dry mouth.”

With these side effects, would I really be dancing in a field of sunflowers in a white dress? I think the image should of a bald person with a scowl eating a bowl of cereal. That would be so much more accurate. Or maybe someone in a straight-jacket in a padded room, which is where I belong during the prednisone days of my therapy.

All joking aside, I still feel grateful that my treatment is going well and I’m happy the chemotherapy is doing its job. I was at the oncology center for bloodwork yesterday and I had the unfortunate experience of seeing someone come out of the Doctor’s office after a not-so-positive diagnosis. It broke my heart, and gave me instant perspective. I am likely to survive this experience. Things could be so much worse.

I also had a moment of perspective during all things an episode of Glee. Two of the characters went to a local hospital to sing to the children with cancer. I think the kids they used in the episode were actual cancer patients. There they were with their bald heads, singing with big smiles on their faces. It made me feel like such a wuss! I need to suck it up. I am a grown-up, and I can get through this. Maybe I do need to get my ass outside in a dress and dance through the flowers.

More shout-outs to the amazing people in my life - a big THANK YOU to Terri, Leslie, and Sarah for replacing the Christmas decorations in my office with beautiful flowers and butterflies. And a shout-out to Angela in Atlanta for the awesome socks. I am cold constantly, and everyone has been concerned about my head, but my feet have been left in the cold. My feet are feelin' the love.

Monday, February 14, 2011

Love is a Chocolate Cupcake

I am home today, trying not to eat all the wonderful cupcakes that my husband baked yesterday. The weekend’s aversion to food has changed to ravenous hunger. I seriously could eat every one of them.

Robbie had Thursday and Friday of last week off so I was able to have four days with my hubbie. Now the house seems quiet and lonely. Particularly because I feel guilty that I wasn’t very nice to him over the weekend. I was fighting the constant influence of the prednisone, and for most of the weekend forgot to tell him how much I appreciate all that he has been doing for me over the last few months. You know when you get married you say those crazy things about “in sickness and in health”, but you like to assume that that whole “in sickness” thing is just a disclaimer.

He hates when I blog about him. But it’s Valentine’s Day, and if you can’t gush about the one you love on Valentine’s Day, then when can you? The thing is he does so much for me that it’s hard to even know where to start. Some things are obvious – like the chocolate cupcakes that he made or the fact that he coordinated purchasing a house for his Mother-in-Law, while taking care of his chemo bride. Or the fact that he takes every chemotherapy day off of work so he can sit with me for five hours and keep me company. Or the 100 little things he does around the house.

He has never once made me feel like a burden, even when I am foul and ungrateful. Today, I am going to try to get all the vinegar out of my system before he gets home from work. Because it’s Valentine’s Day and he shouldn’t have to come home to the lunacy that is brought on by this medication that is making me better, but is making me crazy in the process.

Today is the last day of prednisone this round. Tomorrow I will suffer the abrupt spiral that occurs post-prednisone and then the thoughts of rainbows and puppies will slowly return. But for today, I will have to use the influence of the best chocolate cupcakes to get me through the day.

Happy Valentines Day to the Best Husband Ever.

Friday, February 11, 2011

One Red Cheek

Wow. What a week.

The good news of Tuesday gave me an energy boost that was much needed. I went into work Wednesday with over a half day of meetings scheduled and a to-do list to match. For the first time since this whole ordeal started, I worked late. It seems that just as I start to get engaged in my job again, the plug gets pulled and it is chemotherapy time again. One of my co-workers commented on Wednesday that I looked tired, and I just laughed and said “Yeah, I stay that way.”

Thursday’s chemotherapy was pretty uneventful. Unfortunately, April my usual nurse was apparently off for the day so I had Brandy for a majority of the day. But she was delightful. The only very small complaint I have is regarding where she placed the IV. She decided to give my hand a break, and went about two inches above my wrist on the side of my arm. That was fine, except I couldn’t really bend my hand much. At one point I went to the bathroom and it is very hard to maneuver if you can’t bend your arm at all. I ended up in the bathroom with the IV beeping because I had bent the IV insertion point during the process of trying to pull down my jeans. Oops! She got me all fixed back up though. I also had one of my other favorite nurses finish my chemo. while Brandy was at lunch. She was the nurse who gave me my “chemotherapy training”. She said that I really have been a trooper through this. It actually means something coming from her – she deals with a lot of cancer patients. Robbie bought me lunch afterwards, and then I headed home for an Ativan induced nap.

I had a good night’s sleep last night which was a very good thing because today was going to be a busy day. Usually I try to rest the day after chemotherapy, but today we had some big business to do, and I wasn’t about to let a little thing like cancer treatment stop me. This morning we did the final walk through on my Mom’s house, and then headed to the attorney’s office to sign the papers. It is official. My Mom now has a home in North Carolina! Next, we swung by the oncology center so I could get my white blood cell booster shot. Afterwards, we stopped by the utility office to get the water and trash service started and Robbie could tell I was getting tired. The utility has a convoluted way of setting up the service and I sort of started snapping at the woman helping us. He stepped in and finished up the transaction. We grabbed a celebratory lunch, and then headed home so I could sleep. I napped hard for two hours and probably would have napped longer if I hadn’t had asked him to wake me so I can sleep tonight.

I ate a good lunch, but since about late afternoon I’ve had complete aversion to food. Robbie offered to cook or pick something up, but nothing sounds good. We ran to the grocery store to see if I could find something I like, but no luck. I did get some carnation breakfast mix to add to milk so at least I’ll get some sort of nutrition this evening. Sweets are about the only thing that sound good, but they offer no nutrition.

I am also having a weird side effect today that I’m referring to as “one red cheek”. I’m sure it’s related to the prednisone which is becoming my nemesis. Today, I looked in the mirror and one cheek was completely pale and the other was so red I looked fevered or sunburned. It is the cheek I slept on and I guess it just didn’t lose the color. So not only am I bald, which is hard enough to deal with, but now I have a red cheek. It’s getting harder and harder to pass as a normal person.

I am tired and starting to feel the emotional turmoil that comes with the prednisone. I’m trying very hard to control it this round. I need to not let it take control. It’s about pausing and thinking before I speak. And when I start to get the crazy paranoid thoughts I need to find a way to rationalize that people have not lost their faith in me. I can still be a good wife, a good employee, a good daughter, and a good friend. I’m just temporarily insane for seven days.

Tuesday, February 8, 2011

Are We There Yet?

Last night I could barely sleep. I couldn’t stop thinking about today’s appointment with the oncologist. I had gone to bed early last night because I was exhausted. I told Robbie I wasn’t sure why I was so tired. But he referred me to my own blog post from my last oncology appointment at which I had mentioned I was unusually tired and thought maybe it was the antibiotic. Apparently I’m always tired during this point in the cycle. I knew this blog was good for something! I did eventually get to sleep, though the alarm went off way too early this morning.

I headed to work this morning because there was no way I was going to sit at home all day thinking about the upcoming reveal of my PET scan. Luckily I had a long list of things to accomplish today so the day went by quickly. Afterwards, Robbie met me at the house and we headed to my appointment together.

They first took my blood, as usual, and then we were put in the “lighthouse” room to wait for the Doctor. He didn’t make us wait long – he came in five minutes later and cut right to the chase. He said that the PET Scan results were great, and that I had near complete resolution. I asked what exactly that meant. He said that the mass was gone, and that the report stated that all I had were residual traces in my neck.

I asked how many chemotherapy sessions I still needed to complete. He said I still needed to finish the course of six (three left). I also asked if he still thought I’d need to have radiation. He said that he wasn’t sure yet. I asked if there was anything he could do about how crazy the prednisone makes me. He asked for clarification, and I explained that I was a weepy lunatic. He laughed and said that’s just how it goes.

Throughout this experience I’ve felt like the kid in the backseat that is constantly asking “Are We There Yet?” For too long this cancer has been in the driver’s seat and I’ve felt like the journey is never going to end. It’s been frustrating. But for the first time since this started, I believe with all my heart I’m going to make it. I really AM kicking cancer’s ass! It’s a good thing, because I’ve got big plans for the years to come.

I’m off to drink a glass of champagne and collapse from exhaustion.

Friday, February 4, 2011

It's a Little Bit Funny, This Feeling Inside

Yesterday afternoon I looked at the weather forecast for today. We had a freezing rain advisory for this morning. This concerned me because I was afraid they would close the office where I was scheduled to have my PET Scan. So I called their office yesterday to find out if they typically have delays or close due to weather advisories. I may seem a little paranoid about this, but my oncology center closes at the drop of a hat. Fortunately, because the scan center is affiliated with a hospital they said they generally don’t close.

My appointment was the first appointment of the day. When I got up this morning rain mixed with some small ice pellets was falling, but the road surface wasn’t freezing so I had no problems getting to their office. Coincidentally, it was cold and rainy the first time I went for a PET scan.

One of the great things about living in a smaller town is that the medical facilities are a little more personal. The same technicians that performed my PET Scan in November also did it today. It was comforting in a way. They were so nice during my first visit. I had just been diagnosed and they were so positive about my prognosis. I remember during that first visit the technician told me not to worry if the results weren’t good. He had said that he’d seen people come in and their scans were lit up like a Christmas Tree, and that in subsequent scans they were fine. Let’s hope he’s right!

They injected me with a radioactive form of glucose, and left me for my requisite hour of resting under warm blankets. The actually scan was a little easier this time. The last time, I remember feeling like I had to cough and clear my throat excessively which is difficult when you need to hold still. That was when the tumor was pushing on my windpipe. That was not an issue at all during today’s scan.

They have a radio in the scan room, and today as the scan was starting the radio began to play Elton John. “It’s a little bit funny, this feeling inside…” I found the lyrics funny considering I was being inserted into a tube, while full of radioactive glucose. Indeed, it is a little bit funny. I had a hard time holding back the laughter. I’ll get the results Tuesday afternoon at my appointment with the oncologist.

On a side note, when I returned home from the scan I came home to beagle chaos. I walked into the kitchen to find the water bowl empty, a pool of dog pee, and a shredded treat bag (which was luckily almost empty prior to shredding). I cleaned up this mess, and continued into the living room to find that the dogs had eaten a good-sized bag of cashews. No wonder the water bowl was empty – the cashews were salted!

So far, they seem no worse for wear. That portion of cashews would have been a large portion for a human. For a 50 pound dog it was a HUGE portion. And though I have two dogs, I am pretty sure Meadow ate the bulk of them. She is like a canine vacuum cleaner. They were belly up napping most of the afternoon.

Hope you have a great weekend. I hear there is some big football game on Sunday…

Wednesday, February 2, 2011

Irrational Much?

I didn’t realize how anxious I would be about the upcoming PET scan. The actual scan isn’t the issue. It’s an easy couple of hours filled with warm blankets and specific instructions to relax. It’s the results that are causing the angst.

This PET scan serves as a decision point. It will provide the information needed to determine the course of treatment, and therefore what my life is going to be like for the next few months. I’ll finally know if this last two months of having my life on “pause” will have been worth it. To some extent, we know it has been working because physically we can’t feel the tumor that led to the diagnosis. But we need to confirm that it’s happening in all the places it needs to happen. Even if the scan comes back clear, I will most likely have to finish three more chemotherapy cycles at a minimum to prevent recurrence. But I think if I knew that there was a definite end in sight it might make the experience a bit more tolerable.

We haven’t even talked about what the course of action will be if all is not well with the scan. I’ve started doing online research to prepare myself for that conclusion to make sure I ask the right questions. I know it’s unlikely, but I don’t want to be surprised. From my research, the options vary. For some, it’s additional cycles. For others, they change the type of chemotherapy used. The good news is, apparently we wouldn’t just give up. The bad news is that my pause button would be pressed for a bit longer.

Logically, I can tell myself that it’s going well, and that the PET scan will show good news. But emotionally I can’t stop playing the other scenarios in my head. I am not sure why it’s been particularly bad over the last week. The game plan has been in place since December and I’ve known that we’d be doing this scan about halfway through treatment. And for the first few days after it was scheduled, I was elated because that meant we had reached another milestone on the schedule. I think maybe the issue I’m having is that this is really the first hurdle that could change the game plan.

It is difficult to be diagnosed with something where you could actually…die. It’s hard to type. I hope you never have to experience something like this. It messes with your mind in such unexpected ways. The emotion is overwhelming and constant. Feelings of gratitude for the life you have. Unquantifiable hope for future days with those you love. Intolerance for those who are petty. Anger towards those that are wasting their days. Grief for the life that you might miss out on. Appreciation for the little things. And all of these feelings seem to come like a snowstorm – often one thought after another with no rhyme or reason until you feel so overwhelmed you just want to break down and cry. And that sometimes happens.

This angst is part of the reason I’ve tried to really focus on work this week. It keeps me mentally busy. But that is a double-edged sword. Working all day makes me fatigued at the end of the day. And mental fatigue makes me more likely to spiral into the negative thoughts that I am trying to avoid. I have a prescription from the oncologist for anxiety. He prescribed it when I started chemotherapy, and initially I thought I’d never use it. Now I find myself dutifully taking a pill nearly each evening to help me calm down and sleep. I do have to admit, it helps. It takes all those urgent and irrational thoughts, and quiets them a little. They still exist, but they are no longer desperately vying for attention.

I came home from work early today. I managed to work the full day Monday and Tuesday, but by early afternoon, I was feeling the fatigue coming on. I have a busy calendar tomorrow, so I took this afternoon to nap so that I can be effective and get through another full day tomorrow.

At least tonight is American Idol. Steven Tyler and his unpredictability will certainly distract me for a bit. And maybe after the nap I can make it through the whole episode!