This Dance Sucks

Mambo No. 5 has not been fun. Every time I get complacent and begin to “plan for” the type of experience I’m going to have with a round of chemotherapy, I get a not-so-subtle reminder that it is an unpredictable beast.

It started right from the infusion. My hand is still a little red and sore from whatever reaction I had while receiving chemotherapy. I’m pretty glad that I only have one more to go. For a lot of patients they put in a Port or PICC line so that you don’t have to have a traditional IV every time. But getting those put in are actually outpatient procedures. Because I’m young and was only slated for 6-8 infusions they opted to just go directly into my veins. I can literally see the bruising of every vein they’ve used.

On Tuesday of this week I had the worst reflux I have ever had. It was a wake-me-up out of my sleep nearly vomiting experience. And this was after taking acid-reducing medication and chewing a couple tums at bedtime.

Thursday I had an all-day meeting at work. Something about sitting in a conference room chair all day made my bones literally ache. When I came home from work I was exhausted and in-pain all over.

Additionally, I think I’m developing thrush. This is not a big deal, and I experienced it quite a bit with Rounds 1 and 2. Basically, it’s a very minor infection in your mouth that leaves whatever area that is affected a bit sensitive. In my case, it feels like I really burnt my tongue.

Lastly, and I won’t go into details, my stomach has not been well. This happens nearly every cycle, but usually it is just a day, maybe two. This cycle has been the worst so far. Part of it has been that I have been eating things out of the norm due to lunches/meetings at work.

Oh! I almost forgot. I have again been plagued with a little insomnia. Last night I was looking forward to great sleep considering I was so tired. But there I lay, wide awake at midnight listening to the dog snore.

I do admit, I probably haven’t rested enough this round. I get tired of being on pause, and sometimes just try to ignore the fact that I am not completely well. So maybe I’ve brought some of this upon myself. Robbie said that maybe there isn’t any cancer left, so the chemo is mucking more with my good cells.

I’ve been under the influence of chemotherapy for nearly 100 days. This thing started as the weather was turning cold, and now there are daffodils and cherry trees beginning to bloom. It has been a long cold winter. I have never been so anxious for a new season.

Out of Control

This morning I had my weekly round of lab work. The trip to the lab has become a thorn in my side. I ask for their earliest appointment so that I can try to get in and out quickly. I have yet to get out of their office in less than an hour. My appointment is always for 8:15, and I never actually see anyone until after 8:30. And then I have to wait for the results. I have not once had a low white blood cell count, but they still make me wait every week. This is one topic in which Robbie turns a deaf ear to my complaining. He is of the opinion that any place that is working hard to cure my cancer deserves a little leeway.

It has been little things like this that eat away at my psyche day-after-day. It is the Doctor’s appointments that I have to keep. It is going to bed at 8 PM because I’m so exhausted I can’t stay awake another moment. It’s letting go of projects at work and giving myself permission to do so. It is being on a conference call and feeling ready to scream because I couldn’t think of the next word even though I knew exactly what I wanted to say. It is feeling guilty that not a single person in my life gets enough of my time. I do need to clarify that no one makes me feel guilty. I do it to myself. I am certain that I must have been Catholic in a past life.

When I am in the mood to wallow like this, I have to step back and look at the big picture. I am going to get through this, and I am going to be a cancer survivor. This will be the accomplishment of a lifetime. And I will be better for it. I will remember to laugh every day. I will do the things that bring me joy. I will smile more. I will show appreciation to those I love. As Steven Tyler would say, and I can’t believe I am quoting him, I will be a plethora of passion!

In the meantime, I will try to fill my afternoons with a little afternoon delight made of marshmallow, coconut, and pineapple.

No More Tears

Oh how I am happy when my prednisone days end. Today was the dreaded day five. And for once, and this is a first, I did not weep! I am not sure if it was something I did that kept it at bay, or if I was just lucky.

One approach I took today was to not be amazing. I was a chemotherapy patient today. I went to bed at 8 PM last night and didn’t rise until 8 AM. This morning when I did get up, I was very lazy about it. I did not get a shower and get into “work from home” mode. I stayed in my PJs, drank a cup of coffee, and ate some cereal. For those keeping track of my cereal obsession – this go-around it is whole grain cheerios.

I did have a few “must do” items on my calendar, and I did those. But that was it. I didn’t frustrate myself by trying to do a lot. Part of my issue with the prednisone is that I have no concentration whatsoever. And then I get frustrated at myself for feeling like an idiot, which brings on the weeping and starts the “crazy” cycle.

Because I wasn’t so “crazy” the dogs weren’t all amped up. They slept most of the day. Of course that could be of course because they spent lots of time with their “Grandma” this weekend and were just exhausted. Maybe my Mom being here was good for us all. Maybe I was just tired enough today to not get the prednisone lunacy.

Hopefully I can keep the good mojo going through the rest of the day.

Mambo No. 5

Ladies and gentleman, this is chemotherapy No. 5.

All morning I just kept saying “five of six”. Saying that to my self makes it seem almost done. I can see the end just over the horizon. There is still a chance that I may have to do radiation, but the Doctor won’t give me a definite answer until I have another PET Scan after my treatment is done. Let’s hope not. Everyone please collectively hope that the chemotherapy will be the end of it.

My favorite nurse was back today so all seemed right with the world. We were moving along pretty quickly for most of the morning until I hit the Adriamycin also known as the Red Devil. It decided to earn its devilish name today. The IV was in my hand, and the area below it started to turn red, swell, and get welts. It was just some kind of bizarre allergic reaction. It seemed very strange considering I haven’t had a reaction the other four treatments. The nurse stopped my drip for a few minutes and then gave me an IV of Benadryl and it cleared up after about 10 or 15 minutes. It slowed down my treatment a bit though and it ended up taking over 6 hours today.

For those keeping track of the Scrabble tournament - I won two games, and Robbie won one. I'm still keeping a little of my brain power! I had a 66 point word today with tuxedo! The "x" was a double letter, and it was a triple word score. Good times.

The Benadryl and Ativan drips made me sleepy and I took a nap when we got home. I asked Robbie to wake me after an hour so that I’ll sleep well tonight. I had a fabulous nap that was so good my pillow was wet with drool. After my nap we ran to pick up Robbie’s NEW CAR at the shop. We recently got a Toyota Highlander (used, but very nice) and he had blue tooth installed so that he can use his Droid through the car stereo system. He has promised to post a photo on Facebook, but I have yet to see it! It has been a busy week.

My Mom is in town this week. She has been fabulous and spent the day cleaning our house while I was at work yesterday and at chemotherapy today. My laundry is done, my bed has clean sheets, and our floors our sparkly. It has been wonderful. With chemotherapy it is hard to find the time to do the things you need to do, so house cleaning is not always my top priority. I appreciate it so much!

For the most part, I feel good. I’m starting to pick at my food a bit, but that is normal. I’m drinking lots of fluids and hoping for a good round with minimal side effects. ONLY ONE MORE ROUND! WOOHOO! I’m a little excited…

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.

Tired.

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!)

Diva

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!