A Break

This weekend we had a fabulous break in the weather. It was sunny and in the sixties for both days. (Sorry Mom! She’s been snowed in for what seems like weeks and is getting a little stir crazy.)

It was so nice to sit outside and absorb a bit of sun. We sat on the porch and it was warm enough in the sun to take my shoes off and warm my toes! I even took my hat off for a bit and let my bald head feel the sun for the first time, considering this whole experience has been in the middle of winter. I took a rare picture of my bald self. I hesitate to post it, but being bald is a part of this experience so I need to acknowledge it.

But don’t focus on my bald head. Focus on the beautiful shawl. I need to take and post a better photo – this one doesn’t do it justice. I received the shawl on Friday evening when I got home from work. Robbie’s cousin Elizabeth made it for me. She sent the most wonderful note that brought tears to my eyes when I read it. Thank you Elizabeth – I could literally feel the prayer and positive energy that went into the shawl. It is wonderfully soft and I love the colors. I wore it out and about on Saturday, and it was perfect for sitting outside on Sunday. It is going to get so much use.

I am doing well. The fatigue seems to stick around longer each cycle. I seem to really need a good 10 hours of sleep each night, particularly if I don’t get a nap which is the case during the week when I’m working. Caffeine doesn’t even make a dent in the tiredness.

Bizarrely, something I’ve read to do to combat the fatigue is exercise. We have a treadmill, and I think I’m going to start trying to do a little walking this week. It certainly can't hurt.

Paging Dr. Grey

I am happy to report that I have returned to the mentally stable portion of the population. It was touch and go for a couple of days and I was concerned that I might not find my way back! Thanks for sticking with me.

The upswing started yesterday when the hubbie and I went out on a short date. I know, I’m obsessed with chicken wings. It was nice to get out of the house for something other than work, and it was relaxing just to sit and enjoy an hour with my husband. We’ve both been under a bit of stress, and I think we needed an evening out to unwind. He said he’d take me anywhere I wanted to go, and the classy gal that I am wanted to go to our local Tap Room for buffalo wings. I often get the question about whether I can eat spicy foods. For the most part, yes. In fact, sometimes my taste buds are such that all I want is spicy food. The wings were awesome, but not nearly as awesome as the company.

I have a somewhat new side effect – but it’s a minimal one thus far. I feel like I went to a great party last night, and I had just one drink too many. Not a full blown hangover feeling, but that sensation you have when you wake up and you know you dodged a bullet. I don’t have it all the time – mainly when I have an empty stomach.

I also had my regular episode of the bizarre 3 AM insomnia that I get once or twice during each round. Last night I had a plan to deal with it. My new obsession when I’m feeling tired but can’t sleep is Grey’s Anatomy. I never watched it on live television and they currently have several seasons available on Netflix. The cool thing is I can stream Netflix on the iPad. So last night when I woke up, I popped in my headphones and watched an Episode without even stirring the hubbie.

I want to again thank a few folks for the continued support. I cannot stress enough how each of you makes a difference in my ability to cope. I received a lovely gift from a co-worker today that was one of those perfect gifts full of positive sentiment and it arrived when I could use a jolt of inspiration. And shortly after that, I received a call from another co-worker that had listened to a client talk about her cancer experience. And the woman had said that in order to effectively fight cancer and boost your immunity to the disease you need to do the things that bring fire to your spirit. (I’m paraphrasing here – I can’t remember the exact words, but I think I’ve captured the sentiment). I believe it!

I read a lot of blogs written by cancer survivors, and I find a common thread in survivors who have fought the cancer battle and won the fight. They find it difficult to go through something like this and not find some sort of meaning. The same questions surface time after time. Why did I get cancer? Why did I survive? Did I survive because I need to do something important with my life? Am I doing it? Am I making the most of this second chance?

I’m still fighting the fight, but I know those questions are in the back of my mind as well. Already I know I’m not the person I was when I started this. I just don’t know what it all means yet. I’m a little lost in that regard. But I’m looking forward to the opportunity to figure it out.

Rancid Ham

Yesterday was a bad day. I was in a dark place emotionally, and I had a hard time finding my way out. I was despondent and couldn’t seem to shake it. I’m sure I can attribute a good portion of my mood to the steroids. But it seems to get worse each go-round, and I need to find a way to better manage the down days. Robbie deserves a medal for his finesse in handling my meltdown.

I wrote a blog last night that never got posted. It was a list of about fifteen things that I hate about cancer. It was therapeutic to write, but served no other purpose than a personal whining session. I do have to share item nine though – because today it makes me laugh. It read: “Call me a Trooper. Go ahead.” I’m all for a positive attitude, but once in a while even I can get a bit negative.

Let’s talk about something more “cheerful” – today’s side effect du jour. I went to work today and I was lucky enough to score an extra lunch from a work meeting which was awesome because all I had with me was a pack of pop tarts. I opened the box lunch to find a nice fresh ham sandwich. It didn’t smell great to me, but it looked yummy. I took a nice big bite, and after about three chews I had to spit it into a napkin. The ham tasted rancid. The sandwich was fine, but my ability to taste was not. I took a big swig of a diet soda to get rid of the ham flavor, and the soda tasted like a tin can. The box lunch also had a cookie. Except the cookie tasted like refrigerator odors. At least there was a bag of salty potato chips. The only flavor that always stays true. Salt.

The taste buds will come back in a day or two. In the meantime, there is cereal and wonderful homemade chocolate chip cookies that Robbie made me. Bizarrely, the homemade cookies don’t have the funky refrigerator taste. They just taste like butter. And I can’t really complain about that.

Moody Blues

Chemotherapy side-effects are never the same. The unpredictability makes me a little crazy. But so far, Round 3 hasn’t been too bad.

Let’s start with the good news. The good news is the physical side effects are no worse – in fact are some ways things are better because I am learning the best way to cope with them. I know to take Tylenol and Benadryl before my bones start to ache from the Neulesta. I know to stay hydrated and to eat regularly to avoid that general feeling of “unwell”.

I have been getting pretty good sleep, and have finally succumbed to the concept of napping when I’m tired. I’m amazed at how much better I can feel after a nap. I am concerned though. In previous cycles, the steroids seemed to give me extra energy. If I’m already feeling a lack of energy then the fatigue may be worse this cycle.

Now the bad news. The steroids are making me a lunatic. I feel like I have no coping skills. I bounce between weepy and a raging lunatic. I know it’s the steroids, and the knowing that it is chemically induced is about the only thing that keeps me under control. I take a lot of deep breathes to avoid saying anything. I am a bit of a monster right now. It doesn’t help that we are right in the middle of all the details involved with buying the house. Once we get through this next three weeks our stress level will drop a bit, but right now walking into this house is akin to approaching a ticking time bomb.

Lastly, a shout out to Lorena for sending such a lovely hat! I have never been so happy that I know so many crafty people. It’s beautifully made and fits wonderfully. I have a lot of heavy hats great for outdoors, but this one is particularly nice for wearing indoors. I love the pattern and the colors. Thank you for taking the time to make it. I appreciate it so very much.

I’m off to weep or yell now. Or maybe I’ll torture the dogs. That’s always fun.

Mardi Gras in My Veins

Chemotherapy No. 3 can be checked off the list. For each session, I’ve had the same oncology nurse assigned to me. Her name is April and she’s cheerful, knowledgeable, and good at what she does. I’m to the point that when I am in the waiting room waiting for my name to be called for treatment, I hope it will be April there to greet me.

April handed me a letter that the Doctor had left in my file. Tuesday I had asked him for a Doctor’s note to provide to my insurance provider. I will be applying for some intermittent short-term disability at work considering I’ve used nearly all of my sick and vacation time. I loved the way he worded a particular line of the letter that stated that I was being administered “very toxic chemotherapy.”

Robbie and I played two rounds of Scrabble and I won both. After the first game, April told Robbie she would be giving me the Ativan soon and that his chances of winning would be improving. The Ativan is an anti-anxiety/anti-nausea medication that makes you feel extremely relaxed and drowsy. Usually my mind has about 10 different lines of thought any given minute. Ativan silences all that head noise and actually does make me feel less anxious. It goes into the book as one of those little perks of having cancer. I do admit, probably does not help my scrabble game.

Today I took a photo of April administering the Adriamycin (Red Devil). It is the very red and very bad-ass cancer drug that causes most of the side effects people have including nausea and hair loss. I think a lot of chemo. regimens have this particular drug. She hand administers it into my IV line. If this particular drug gets on your skin it will literally destroy the tissue. Not sure how it survives in the veins in order to do its job, but apparently it does.

After chemotherapy, Robbie and I came home and I managed to stay awake for about an hour, but then headed to bed and took a wonderful two hour nap. I’m hoping the nap will allow me to stay awake until a normal hour this evening. I’m looking forward to watching American Idol. Although these new judges have me wondering how long I’m going to stick with this season.

Three is a GO

Today I met with the oncologist in the Lance Armstrong room. It was a great visit. He was happy with my progress and is scheduling a PET scan in two weeks! The PET scan will see how much cancer is left and gives him the information he needs to determine how to move forward. Both the Doctor and the Physician’s Assistant (PA) were all smiles today which makes me feel really hopeful. It is always fun when they feel my lymph nodes and can’t even find where the tumor and swelling existed just over a month ago!

I mentioned to the PA that I have been REALLY tired the last couple of days and that I thought maybe it was related to the antibiotic I started late last week. She said it probably didn’t have anything to do with the antibiotic, and it most likely had everything to do with the side effects of chemotherapy.

I’m on a five day streak of going into the office. Unfortunately the more I’m there, the more there is to do, and the more I feel like I need to be there. You show up too much and everyone thinks you are back to normal! Sometimes I start to believe it too. But I’m not. I am not Super Girl. I need to fight cancer first, and everything else comes second. Someday I will be able to work all day, come home, wine and dine with the hubbie, and stay up until 11 PM. But that is not today. In fact, tonight I’ll be lucky to drink my sprite and stay up until 9 PM.

Thursday’s chemotherapy cycle and subsequent shot on Friday will put a forced end to the vicious “need-to-work” cycle for a few days and I will be getting some much needed rest. Yesterday afternoon, I was so tired that I had to close my door to put my head down on my desk for a few minutes.

A shout out to the Catawba Valley Cellar Rat folks that are keeping up with this blog. It was nice to see everyone this evening, even if I couldn’t partake in all of the fabulous wines.

I’m too tired to write anymore. This bald gal is calling an end to a pretty good day.

Send Chicken Wings

My taste buds are still out of whack. My favorite foods have been abandoned for a bizarre and ever-changing list of new fare. Currently, my top favorite food is buffalo chicken wings with blue cheese. I have no idea why I crave this. Most things with any type of tanginess repel me. But something about the buffalo sauce and the contrasting blue cheese strikes my fancy. Why can’t it be something wonderfully good for me? I have read that most chemotherapy patients crave strong flavors. One woman I read about craves wasabi.

Cereal is still high on the list as well. Something about the contrast of the crunchy with the milk. In fact, I’m drinking much more milk lately. We usually only buy half gallons of skim milk – anymore than that and we’d pour half of it out before the expiration date. Recently, because of the snowstorm, they were out of half-gallons, so we went ahead and bought a full gallon. It doesn’t expire for another 10 days, but I’ll need to buy some early this week.

In other news, I picked up a new side effect this week. I’ve been getting some skin infections – apparently this is a very common side effect. So now I’m on antibiotics. They have cleared up the infections, but have given me minor back pain. I’m getting annoyed with all the side effects you have to endure to be well.

Friday when I arrived home, I was pleasantly surprised that I had received two packages in the mail. I have to honest, in the beginning of having something like this you receive tons of well wishes and attention, but after a while it quiets down and most people aren’t thinking about it. I’m not criticizing, but that is the nature of life. We all have things going on that we’re focused on. But I am regularly surprised that I have amazing friends who are still sending me their prayers, vibes, and even presents!

A shout-out to Melissa, my partner-in-crime in Raleigh. She sent me a fabulous tin of cookies from the Carolina Cookie Company. I should be sending her cookies because I know she has taken on extra work while I have been going through treatment. THANK YOU!!! The hubbie and I have been munching on them all weekend.

And MANY THANKS go to the Nashville office of my company that sent me a handmade hat. It is beautiful and fun. I believe those are Tennessee Titan colors! I will wear it with pride. It is a cold winter and that hat is going to come in handy. I try to wear the wig to work so I don’t freak people out, but when I’m running errands or around the house I tend to wear hats. This hat is going to get a mileage. And it’s so darn cute, I might have to wear it to work!

Four days until chemotherapy. But if things go as planned, this session puts me at the halfway point. Someone commented to me the other day that it is going by quick. To me it seems like an eternity. But I have to admit, halfway through sounds good…

Bloodsuckers

Every single week I get blood drawn. On the week of chemotherapy I get blood drawn from my finger. This is one last check to make sure that my blood counts are ready for the poison. A week later they do another draw. This one is also a finger prick, and it determines whether my blood counts are dropping which would make me prone to infection. The second week after chemotherapy is my least favorite. This is the week in which they do a full blood draw from a vein in order to run a panel of tests for the Doctor’s visit I have the week of chemo. And then it starts all over again.

Today was my routine blood work visit, and next week is chemotherapy so I assumed it would be the full blood draw. Except when they call me back she tells me that my paperwork says that it’s just the blood count (finger) draw. I asked her if she was sure, because this is my week for the full deal. She said nope, just the finger draw. This was a pleasant surprise! Woo-hoo!

Once your blood is taken, you are sent to the lobby to wait for your lab results. They make you wait because if something is wrong, they want to address it right away. So far, every time I’ve gone I’ve been given a “good to go!” While I was waiting, I saw two people who didn’t have “ok” results that had to be sent for shots to boost their white blood counts. When she called my name to give me my results they told me to come on back. I said “I don’t need to come back, I’ve already had my blood taken.” And she says “Oh, they said to go ahead and do the full panel (translation: vein stick!”).

Not nice! I was so ready for my “good to go!” I guess they realized their mistake, but that was a bit of a bummer. And then I had a new girl who was having a problem finding a place to stick me. At this point, I know what works. I tell her the left arm veins are out because they are still bruised from chemo. The hands have been very successful, and the right arm is fine. I explain to her that mine are sometimes hard to find but that they are usually good – no one ends up sticking me twice! She tries to find the best spot for about five minutes and is very tentative about the whole thing. Her vampire trainer takes over and fines a vein in like a minute. Nothing annoys a cancer patient more than new/tentative vampires. We get stuck A LOT – we should get the luxury of the best blood technicians.

A shout out today to Bernie who sent me the most delightful light-up tiara along with a card declaring me a pirate princess. Thanks for the wonderful chuckle! I so wish Bernie and I had gotten more time to know each other when I lived in Gainesville – I think we may have been very good friends. Bernie, you’ve always got a vacation spot in NC!

Happy weekend folks!

White Out

I am going stir crazy.

I have a window each chemotherapy cycle that I feel pretty normal. I try to work and get out of the house as much as I can during this time. Even if I am in bed by 9 PM each night from fatigue, it is worth it in order to maintain sanity.

I had big plans to work in Charlotte all week with the exception of one lab appointment. In fact, I was sort of excited because we were having a big all day meeting on Tuesday and I would get to meet some co-workers I hadn't met yet, and see some others that I haven't seen in months.

Then the snow came. When we got up Monday morning everything was covered. Everyone was advised to stay off the roads. So it was another day at home. This definitely dampened my spirits. But I was hopeful that at least I would make it to the big Tuesday meeting. Except when Tuesday morning came the roads were still pretty bad.

So instead of being in the office I stayed in my PJs and spent a good part of the workday on a conference call. It is hard to feel smart in your pink fuzzy bathrobe. I am one who feels that facial expressions and body language are important part of discussions. Everyone talking on the phone just wasn't the same.

Being sequestered at home so much definitely goes on the Top 10 list of things that I dislike about this experience. It is particularly hard this time of year when I can't take advantage of our outdoor living space. I have never really liked working from home. I always struggle to stay on task. I could usually manage a day or two, but this week after week thing is kicking my ass.

Next week is Chemo No. 3. I am starting to dread it a little. Let's tally the fun brought by Chemo No. 2: Heartburn, upset stomach, loss of taste/appetite, dry mouth, numbness in fingertips, insomnia (though much better than Round 1), aches and pains, low-grade fever, concentration problems, and fatigue.

Round two in some ways was better. I had less heartburn, less insomnia, and didn't get the crazy steroid hunger. But the fatigue has stuck around a little longer and a little melancholy about the situation is getting harder to shake off.

I am going to go to sleep now hopefully. I have big plans to go to Charlotte tomorrow and should try to sleep for the big drive in tomorrow!

- Posted using BlogPress from my iPad

Never Did Mind About The Little Things

What a nice Saturday morning. I had a great night of sleep last night and woke up feeling refreshed. They called for a little snow last night, but it didn’t happen. But this morning we’ve been getting these little “blasts” of snow flurries. It is windy today, so the snow doesn’t really fall as much as it blows around. And the flakes are the big fluffy ones that are easy to see from the comfort of your warm house.

And since it’s a cold blustery morning I decided to curl up in my pajamas and find something to watch on television. A movie that I love was on – Julie and Julia. So I sat happily watched both the movie and the snow. Yesterday, I had picked up the stuff to make cinnamon rolls and surprised Robbie with those this morning.

One of the few positives of this whole experience is that I have so much more appreciation for the day-to-day. Before, a Saturday like this may have been filled with guilt about the many things I should be doing. But right now, my house is a mess, it’s after 11 and I’m still in pajamas, and I am ok with it. I’m enjoying this morning.

I feel a bit like I’m stuck in a moment right now. I have been given this horrible news of this illness that could be life-threatening. But I’ve been given a wonderful chance at a cure if I am strong enough to endure the treatment. And so right now, I’m in this weird “in-between” place. Not yet cured, but full of potential. And so there is this part of me that feels like I need to prove to the world that I deserve this chance. I need to be the best person I can be. I need to appreciate all the joy and beauty that life has to give. I need to be patient with others. I need to not want to kill the dog when she passes gas so terrible that I think I might pass out (as she just did).

I have been trying to think of a way to end this entry, but everything I type sounds like I’m trying to be Gandhi or advertise my new book on the power of positive thinking. Everything sounds just plain cheesy! So I’ll just end it by saying have a great weekend.

Head for Cover

Lately I feel like that short story “Flowers for Algernon”. It’s a story about a guy named Charlie, who has his intelligence temporarily enhanced through science. As the story progresses, he finds that the change is temporary and that he is going to lose all the brainpower he has gained. He goes from having really deep and intellectual thoughts to not being able to comprehend things he could easily understand days ago.

Chemotherapy can be like that some days. Today as I was leaving the Doctor’s office I turned the wrong way to get to my next destination. I also left the front door unlocked this morning (don’t get ideas – we have security). I have to write down nearly everything. I do have moments of clarity, where I’m firing on all cylinders. I had a brainstorming phone call at work yesterday and it was the first time in weeks I felt like I was on my game. It is important that I continue to try to keep my mind as sharp as possible. Otherwise, by March, this blog could read “Had chemothrpy. Not fun. Need a knap.”

But let’s not talk the loss of mental capacity. That’s depressing. Let’s talk about the high point of my day! Let’s talk about the amazing wonderful fantastical hat I received in the mail today. My friend Chris in Gainesville made it for me and it is the best gift ever. His wife Sharon definitely had some input on the color. It is fuchsia and it fits perfectly. When I think of Chris knitting this beautiful fuchsia hat to cover my bald head it brings tears to my eyes. Chris is bald, and he is someone who certainly understands how freaking cold one’s head can get when you have no hair. I think I will wear it to work tomorrow instead of my wig. Thank you from the top of my head and the bottom of my heart!

Pick Yourself Up, Brush Yourself Off...

I threw myself a royal pity party yesterday, and I was the star diva. But every party ends. And don’t you hate those parties where you look back at your own behavior and you feel completely embarrassed? That would be me.

I went to bed early last night and told myself that when I woke up, I was going to shake off the negative attitude and have a good day. And that is what I have done. I got up with Robbie this morning and got ready for work like a normal person. I still have some achiness/bone pain and food adversion, but instead of wallowing in it, I just accepted it and moved forward with my day.

Today was the first day I wore “red” to the office. It went over well though. No one laughed at me. One of my co-workers said she could tell that I was worried that it would move around on my head, and said it was amusing how stiff I held my head and neck.

I can’t stress enough that the challenge of getting through chemotherapy is very mental. The fact that the treatment is going to take MONTHS of my life messes with my head. I go to at least one medical related appointment each week. That totally sucks. It’s like you can’t get away from it – even for a week.

All this being said, I need to stop complaining. The alternative to chemotherapy is not an option. So red and I will keep on keepin’ on.

I Hate the World Today

For both chemotherapy cycles, I have had one day where I just can’t hold it together. I am achy, tired, and mentally ill-equipped to deal with the emotions of the experience. It is the one day out of twenty-one when I am not strong. I am not a role model patient. I am just tired and angry.

It is day six of the chemotherapy cycle. Today. Day six is the day after the steroids end which is why I am having horrific mood swings. It is also when I begin getting random aches and pains including bone pain from the shot I received yesterday. This morning I tried to sleep late to try to minimize the effects. No such luck. I woke up at 9:30 ready to rumble. I have yelled out loud at E-mails and various things around the house.

This is also the time frame where I have the palate of a four-year old. Last night for dinner I made whole-grain macaroni and cheese, and a beautiful salad with walnuts, blue cheese, and red apple balsamic vinegar. It all tasted horrible. I ate a bowl of Cap’n Crunch. I feel like the Cap’n is my only friend right now. Is he bald? If not, I might not like him either.

Anyways, just trying to ride out the storm until the emotions subside.

Happy New Year!

Happy New Year! I know all of us in my household are very happy to see 2010 go away. It was not our best year by a long shot. But I think we’ve come to realize that life is a cycle, and you have to have the low points to appreciate the good. And let’s just say we are really ready to embrace greatness.

Something I’ve been learning over the last few days is that the body’s reaction to each chemotherapy cycle is very different. This time I’ve had much less of the middle-of-the-night uncomfortable heartburn feeling. I think that is because of the reduction in the amount of steroids. I do still wake up, but not nearly as much as the first go around. I also believe that because of the steroid adjustment, I am also able to take an occasionally nap which makes me feel better. I am also able to go for walks and do moderate activity which I wasn’t able to do when I had the tumor and couldn’t breathe. The hunger is not as crazy this time either. I don’t crave things, and I don’t have that “starving” feeling constantly. So for the most part, this cycle has been going well.

I am also experiencing what is referred to in the cancer community as “chemo brain.” I usually have a great memory and am good with words, but lately I have had just a little bit of airheadedness. For example, I ordered something for my Mom, and was surprised when it showed up on my own front porch! Oops! To combat this, I have been doing daily word puzzles to help keep the neuro-pathways clear. I think the blogging helps as well. From my understanding, this phenomenon is temporary.

Monday I get the Neulasta shot again. It does make my bones ache a bit. I did a little skit for Robbie about the effects of Neulasta. Unfortunately, my writing about it doesn’t give you the benefit of all the wacky voices I did during my skit. I said that Neulasta causes the little elves in my bone marrow to make additional white blood cells. Except there isn’t really enough space for the additional cells. But they’ve received their orders so their “MAKING MORE! MAKING MORE!” But it won’t fit! Too bad, because they are “MAKING MORE!” Ok, it was so much funnier before I wrote it all down.

Today I got my head shaved down to just fuzz. It feels better, and I don’t feel like a molting chicken anymore. I wore my wig out twice today. Both times I was very paranoid. If someone nearby laughed, I was totally certain that they were laughing at me in my wig. Wearing the wig is an adjustment. I worry that it’s moving around and that I am looking like the weatherman in the bad toupee.

I’d like to thank everyone for all the support I’ve received over the last few months of 2010. The cards, E-mails, cookies, candy, and comments have provided more comfort than you can ever know. In the case of the great treats, maybe a little too much comfort! It never failed than when I was at a low, a card or an E-mail arrived that gave me just the little lift I needed to make an attitude adjustment.

To all of you, dear readers, have a wonderful 2011. I see great things ahead! Beautiful babies (cousin Candie , Audrey, and many co-workers), a lovely new home for my Mom, NED for me (that means No Evidence of Disease!), great wine from Savage Beagle vineyards, and many other things that have not even appeared on the horizon yet.

Good night - I am off to beat the hubbie at a game of scrabble.