Breaking Dawn

Life can change immensely over the course of a year. 

On this day last year I found out I had cancer.  I was in shock.  I felt hopeless.  I was terrified of the future.  I couldn’t imagine how I would get through the next hour, let alone a day or a week.  It was one of the worst days of my life.

On this day, I am cancer free.  I feel full of hope.  Full of gratitude.  I try to embrace each hour.  Each day.  Each week.  Every day I am here is a great day.  Ok, let’s not be crazy.  I have bad days.  But I appreciate that a bad day is still a life-filled day.

It is officially time to put this whole cancer thing in the past.  It’s time to move forward.  For now, I’m going to stop this blog.  It’s become a place of focusing on the negative aspects of my recovery, and I need to focus on the positive.  I need to focus on living.  Should I need it, I know where to come.  It will always be here for me.  I will leave it online as a place of information for those just starting their journey.  But I don’t need it anymore.  I may occasionally write a “still cancer free!” post after my regular check-ups, but that will be the extent of it.

I also find it appropriate to end it at a time of year when it’s tradition to share gratitude and thanks.  My cup overflows with gratitude to each of you who have been with me through this journey.  You will never know the strength you gave me.  You are the reason I got through this.  You are the reason people say I’m strong.  Thank you for laughing at my dark humor, and for knowing when I needed a note or an E-mail or cookies. 

 “Gratitude unlocks the fullness of life.  It turns what we have into enough, and more.  It turns denial into acceptance, chaos to order, confusion to clarity.  It can turn a meal into a feast, a house into a home, a stranger into a friend.  Gratitude makes sense of our past, brings peace for today and creates a vision for tomorrow.”  ~Melody Beattie

Not So Special

It was two days before Thanksgiving of last year that my life was forever changed.  I was given the cancer diagnosis that kicked off six months of grueling treatment.  It was the initial diagnosis that came with almost no detail and I remember spending the long Thanksgiving weekend wondering if it would be my last Thanksgiving.

I have been feeling emotional the last few days, and I’m trying to understand why.  I think part of it is that I can put a year of fighting cancer behind me.  I can move forward into a new phase.  I also think this type of anniversary is bringing the whole experience to the forefront of my mind.

Lastly, I think a little bit of the emotion also may be the difficulty of assimilating back into normal.  When you have cancer, you become “special”.  Everyone gives you a break because you’re going through something awful.  People lower their expectations of you.  And that is a good thing because just getting out of bed can be an accomplishment when you are going through cancer treatment. 

But then life goes back to normal.  And the expectations are raised and you are not so special.  And working a 60 hour work week isn’t enough to even feel like you accomplished something normal, let alone special.  And it’s hard to make that adjustment mentally.    

I feel a bit broken still and I’m still mentally healing.  But after a year, no one wants to hear about it anymore.  And this is not an awful thing.  It’s just human nature.  Life goes on.  And so I smile and I stop talking about it, and I try to move forward too.  And slowly but surely, the smile is becoming more genuine.  And some days I go nearly all day without thinking about cancer. 

I have much to do, so I must stop this monologue.  There is a refrigerator to clean, and a house to get ready for Thanksgiving.  But I will try to move forward with a spirit of gratitude and joy.  Because those are the things that make us all feel special.

Hair Progression

I have tons rattling around in my head that I need to post.  My mind is blown by the fact that I was diagnosed with cancer this month a year ago.  It's hard to believe and it's been a little difficult to comprehend all I've been through.  I'll save these thoughts for some big mega post in a week or two.  In the meantime, I'll show you what I do when I'm on conference calls that won't end!  I photograph my hair!





In early June I thought it would NEVER grow.

A few weeks showed quite a bit of growth!

At this point I was only wearing the wig about half the time.  It was July and HOT.

Here I felt like the little squirrely best friend from Fright Night.  Seriously bad hair in August.

Getting better in September, but still not enough to really style.

November - It has more curl than it did before!  I wish the front were as nice as the back.

November - Sad sad bangs...

Annoyingly Happy

I am becoming that annoying person that people love to hate. 

I am that person who comes storming into work each morning, over-caffeinated and far too cheerful.  If you start to complain about your day, I am likely to say “Well, at least you are alive, employed, and have health insurance.  It could be so much worse.”  If you start to tell me your problems, I might zone out a bit because in my head I’m thinking “Really?  These are problems?”

Don’t get me wrong.  I have bad days, and I have bad moments and occasionally I throw a pity party for myself.  But I can usually snap myself out of it by reading the posts of other cancer survivors/fighters or by going back and ready my own writing and remember how I longed to just have normal stressful days. 

It annoys me when I see people just fester and spend an entire day angry about things that mean nothing in the grand scheme of things.  Life really is too short.  I was listening to the radio the other day to a snippet of a commencement speech given by Steve Jobs and he said:

“When I was 17, I read a quote that went something like: "If you live each day as if it was your last, someday you'll most certainly be right." It made an impression on me, and since then, for the past 33 years, I have looked in the mirror every morning and asked myself: "If today were the last day of my life, would I want to do what I am about to do today?" And whenever the answer has been "No" for too many days in a row, I know I need to change something.

Remembering that I'll be dead soon is the most important tool I've ever encountered to help me make the big choices in life. Because almost everything — all external expectations, all pride, all fear of embarrassment or failure - these things just fall away in the face of death, leaving only what is truly important. Remembering that you are going to die is the best way I know to avoid the trap of thinking you have something to lose. You are already naked. There is no reason not to follow your heart.

Your time is limited, so don't waste it living someone else's life. Don't be trapped by dogma — which is living with the results of other people's thinking. Don't let the noise of others' opinions drown out your own inner voice.  And most important, have the courage to follow your heart and intuition. They somehow already know what you truly want to become. Everything else is secondary.”

And I’ll be honest, I may have said this all sounded like a bunch of pompous bull prior to this whole cancer thing.  But those words resonated with me in a way that is difficult to express.  And what he says about being unhappy too many days in a row – so very true.  We all have obligations that have to happen and being employed isn’t optional for most of us.  But if you are miserable at work everyday, then you are probably in the wrong line of work.  I am fortunate that I have a career that I enjoy and manages to nourish me both intellectually and creatively.

And even if you are in a job that you have to do solely to pay the bills, what is the harm in trying to make the best out of it?  There is nothing wrong with making the best of a bad situation.  As Abraham Lincoln once said “Most folks are about as happy as they make up their minds to be.” 

So me?  I’m going to be annoyingly happy.

Save the Assholes

Let me start by saying that I am all about cancer awareness.  Early detection is frequently the difference between life and death.  I am 100% certain of this.  This post is not intended to discourage anyone from cancer detection.  I am just sharing my own personal perspective. 

October is breast cancer awareness month.  How do I know this?  How could I NOT know this?  Between the blitz of radio ads, billboards, walks, runs, workshops, T-shirts, ribbons, and bumper stickers it would be impossible not to know about breast cancer awareness.  I grabbed an egg out of the refrigerator the other day, and even it was stamped with a pink breast cancer ribbon.

As someone who works in marketing I completely understand why breast cancer gets all the awareness.  Between a great spokesperson (Susan Komen), pink ribbons, and a whole society of people that wants to save the tatas it is an easy sell. 

But sometimes I think we as a society are so focused on saving the tatas that we forget about the folks that are fighting the less glamorous cancer fight.  Let’s talk about the men and women with rectal cancer that not only have to fight cancer, but have to be ashamed to talk about it.  Try going to your doctor to talk about those issues.  No one is giving them a pink ribbon or stamping an egg about awareness. 

Or the folks with tonsil cancer – one of the most painful cancers to experience.  Tonsil cancer patients undergo one of the most painful treatments imaginable and it goes on for months.  And it’s usually diagnosed from a sore throat that just won’t go away.

Most people don’t even realize my cancer, lymphoma, is a blood cancer.  And it’s often diagnosed from a set of symptoms (commonly referred to as “B symptoms”) that seem bizarre – itching, weight-loss, night sweats, and low grade fever.  I didn’t really have any of those, but you’d be surprised as the number of people who do and it takes months and months for them to figure out what they have because there is no real awareness.  Cancer symptoms can be obvious – a lump in your breast or on your prostate.  But they can also be much more subtle – stool changes, frequent urination, tiredness, a wart or a mole, white spots on the tongue, coughing, anemia, headaches, and weight loss.  It could be a single symptom or a combination. 

I am not writing this to scare you into trying to learn all the symptoms of all the types of cancers.  That is a ridiculous notion to anyone who hasn’t been through a cancer diagnosis or had a loved one with cancer.  But I am writing this to encourage you to listen to your body and see a professional if you are feeling “off”.  If it ends up being nothing, you’ve lost nothing more than a couple of hours of work and a few bucks.  You are not so important that your workplace cannot function without you for two hours.  But if it is something, you may have gained a lifetime due to early detection.

So yes, save the tatas. But how about we try to save everything else too?

Full-Speed Ahead

I can’t believe how long it has been since my last post.  I have been so very busy that it has been difficult to find the time to stop and reflect. 

Cancer is becoming more of a memory.  And as time passes, the details become blurred and it is slowly becoming this thing that happened a while back.  I thought the day would never come in which it wasn’t constantly consuming my thoughts, but time is a wonderful remedy.  There just might be life after cancer.

I haven’t been great with the treadmill this week, but I have been pretty active so I feel good.   For example, last weekend we finished painting the kitchen.  The kitchen I started to paint years ago that remained half-painted all through my cancer days.  It was one of those things that made me feel like my life was on pause.

This fall is sort of surreal.  I am doing all the things we do each fall.  Except now I know that last year at this time I had cancer.  Yesterday we went to Ocktoberfest, and as I was walking around I was remembering that last year I felt so tired.  And I felt wonderful this time, which gave me more confidence that maybe the nightmare really is over.  It is hard to describe, but I feel like my “cancer ghost” haunts each experience.  But it is important for me to remember how far I’ve come so the ghost can stay for now.

Last week was very busy at work, and this week is more of the same.  I have a gauntlet of travel the first part of the week that includes a one day trip to DC (fly in and out same day) and a trip to Raleigh for two days.  But for so long I felt “grounded” that it is sort of exciting to get out and see people and really jump in with both feet.

Lingering side effects are almost completely gone.  Probably the one that drives me the craziest is that when I’m really tired I really struggle for words.  It’s not that I can’t gather my thoughts; it’s that I can’t find the right words to express them.  And this totally frustrates me because being able to speak intelligently on-the-spot is an important part of my job.  I just need to be cognizant and try to get appropriate amounts of sleep. 

Today was a fabulous day of emerald mining with Ust Gunder, Tom Tom, and the hubbie.  We had a great time, but I think every inch of my body is exhausted so I’ve got a serious night of relaxing planned.

Two last thoughts – rest in peace to Steve Jobs who lost his battle to cancer.  Cancer sucks.  I am sad that we will never know what ideas were still in that head of his because of this stupid disease.  Also, I am very sad that my dog niece Val also passed away this week.  I have great memories of watching her and Zoe romp when they were young dogs.  I know that she is somewhere doing that now and feeling no pain.  Much love to Rosalie who is missing her fur-baby.

Walk This Way

This week when I started exercising on the treadmill, Robbie asked me if I had initially been reluctant to start exercising because I was afraid I wouldn’t be able to breath.  I hadn’t said anything to him about it, but he hit the nail on the head.

The first day I got on the treadmill, I started at a snail’s pace.  I was absolutely sure that once I got up to a decent pace that my heart race would sky-rocket and that I’d be gasping for air.  Last year, the main symptom that signaled that I had cancer last year was an inability to breathe when doing any kind of exertion.  Even though I was given an all-clear in August, I still worry a lot.  But all was well!  My heart rate certainly increased, but only in the way it should.  And I could breath.  My breathing was heavy, but I was breathing.  And I can’t tell you how wonderful it felt. 

The exercise is going great, and I’m feeling great as a result.  The first day was rough with regards to shaky muscles, but it has gotten better each day even with an increase in time and distance.  I set a small goal this week – to do a mile in a single session.  And I accomplished that yesterday.  I want to increase by a mile a week until I’ve reached three miles in a session, and then work on increasing the speed/incline to get more benefit.

I’m hoping by next month’s check-in with my primary care that I’ll be doing my three miles a day and that I’ll be a few pounds down as well.  And hopefully she and I can work on a plan for long-term health and cancer fighting strategies.    

One step at a time.

Shake a Leg

This past weekend was a wonderful fall weekend.  Saturday we took a drive to a winery we love for their annual cider festival.  On the way back we stopped at an apple orchard for fresh honey crisp apples.  I can’t express enough how much I love this time of year.

I have finally dusted off the treadmill and gave it a spin.  It was brutal.  But I did it.  I’ve been out-of-shape many times, so this isn’t my first time back in the saddle.  But this definitely is going to be the hardest.  My legs have never shaked so much in my entire life.  I used to be an avid walker, and was known to walk an 8-mile stint on a Sunday afternoon.  And the first time I did that, I had some shaky muscles.  But I’ve never had that with only .6 miles.  But tomorrow is another day, and it will get better.

I am hoping this exercise will give me a bit of confidence in my health.  Or that at least the exercise endorphins will help me cope with the anxiety I still feel.  I have extreme paranoia over every ache and pain.  The ragweed has been getting to me, and I’ve had a little tightness in my chest.  I know it is allergies because I can hear the wheezy congestion.  But it doesn’t keep me from thinking I’ve having lymph node issues.  Keep in mind this all started with an ear ache/sore throat.  If I have lower back pain, I think I have cancer.  If my foot itches I think I have cancer.  If I have cramps, I think I have cancer.  I wish I could stop these thoughts.

And apparently I’m not the only paranoid person in the household.  I often get the question “Are you alright?” in response to every cough, sniffle, and groan.  I know that it’s only out of concern, but it only plays into my already intense paranoia. 

My plan to cope is to keep enjoying fall, keep walking, and hug some beagles.

Superstar!

Today I’d like to talk about how proud I am of my Mother.  Today I accompanied her to her colonoscopy.  She put aside her fear of needles and anesthesia and all things medical to get one of the most important screenings available for the early detection of cancer.  Women are just as likely to be diagnosed with colon cancer, as they are to be diagnosed with breast cancer.  People just don’t like to talk about it.  She was an absolute trooper, and followed her preparation instructions to the letter.  And the preparations are not fun.  Not at all.  But she did it.  She did have some polyps and those were removed.  So it is very good that she went.  And I think she’s pretty awesome.

Ironically, the gastroenterologist’s office was in the same building as my surgeon’s office.   The office of the surgeon who performed my biopsies and presented my cancer diagnosis.  So to say it is not my favorite place is an understatement.   But today, it was made a more positive place.  

Chopped

I finally went for my first post-chemo haircut. I’ve been reluctant to get it cut just because I have so little. But it was getting wooly around the ears and along my neck. Word on the street is that if you hold out on getting it cut you will end up with what is referred to as the “chemo mullet”. I’ve been through enough, a mullet would just be adding insult to injury!

He cut the areas that were disproportionate and trimmed up the places that desperately needed it. We are going for “pixie”. Bizarrely, my hair looked longer when I left than it did when I went in. It’s amazing what a little shaping will do. I will continue to take my multi-vitamin as well as biotin to promote hair growth.

I was bizarrely happy about the haircut. It’s one more milestone to separate me from the Big C!

The Cost of Cancer

In previous posts I have mentioned receiving rogue medical bills. It happens every month or two. For many of my treatments, if I pre-notify the insurance company (call them ahead of time to let them know I’m having a particular treatment) they will cover the treatment. The most I usually have to pay is a small co-pay for an office visit. This month I received a $700+ bill for part of my radiation treatment. I called my insurance company, and I just needed to clarify the billing organization. They were billed from the radiation group, but the pre-note was for the hospital. This has happened on several times. In the area where I live there are groups within groups within medical centers. Once I make them aware of the connection, they re-process the claim.

While I was online pulling the claim numbers and dates, I noticed that I could pull a comprehensive list of all the claims into an excel format. I couldn’t resist. I pulled everything for the last year, and summed the processed insurance claims into a grand total. And then I gasped. I could not believe the number. It was staggering. To date, they have paid over $147,000. And to think that compared to many patients I had what would be considered “cancer lite”. My treatment only included doctor visits, six chemotherapy sessions, 18 days of radiation, a bone marrow test, four PET scans, a MUGA scan, and a whole lot of lab work. My treatment did not include any surgeries or hospital stays.

I am so thankful to have wonderful insurance. I was diagnosed two days before Thanksgiving last year. And I remember being at my in-laws house and one of Robbie’s parents asking if we had cancer coverage. They mentioned that sometimes you have to sign up for that separately. And I knew I hadn’t specifically signed up for any type of cancer coverage. We went online that weekend and were pleased to discover that I was covered – at 100% on most things cancer related as long as I pre-notified.

On a brighter note, I feel great right now. I thought I was back to normal a few weeks ago, but I am feeling even better lately. I’m back to my annoying cheerful self. And slowly but surely, I’m regaining some confidence that was lost. Self-doubt has been replaced with a “can-do” attitude. Watch out world. I’m back.

Cancer treatment? $147,000.
The opportunity to live a great life? Priceless.

Where Were You, Christmas?

Last night, Robbie and I were chilling at home watching a movie. I’m not sure how the subject of Christmas came up, but for the life of me I couldn’t remember a thing about what we did on Christmas last year. Cancer ruined Christmas!

I could not remember that we didn’t have a Christmas tree until we started to discuss it. I also couldn’t remember if we exchanged gifts. I had to go back and read my December blogs to figure it all out. I was able to piece things together and now vaguely remember that my Mom was here, it snowed, and that we didn’t do any serious gift giving because we were getting ready to buy a house. I had tears come to my eyes last night when I couldn’t remember the details.

In other news, I am happy to report that the cancer fog has lifted. Up until the last few weeks, I was still struggling to concentrate. I was telling Robbie today, that it was very frustrating to know that I was smarter than I was able to be. And that I finally feel as smart as I am. Even though the structure of the last two sentences may leave some doubt in your mind. I am going to blame my poor sentence structure on the cosmopolitan I enjoyed with dinner.

I would consider myself a multi-tasker. It is routine in my job to be on a conference call while working in a document, and have someone else standing in the doorway trying to ask a quick question. For a while there, I had to uni-task. If I was on a call, I needed to focus 100% on the discussion. If I was working on a document, I could only focus on the document, and heaven forbid it require math. But I have found myself back to my multi-tasking self and it feels amazing. I feel capable. And as Kate proclaims at the end of the world’s most cheesiest and wonderful movie, The Cutting Edge, “I’m in the mood to kick a little ass.” I’ve taken on cancer, now maybe I’ll work on accomplishing some things in the real world.

I know that at times, my posts seem written by someone who is bi-polar. One day I feel overwhelmed by everything, and the next day I’m ready to rock-and-roll. I think some of it stems from the hormone shifts that are still trying to normalize post-chemo. I am due to make an appointment with my normal doctor (not an oncologist!) to get some of this hormonal stuff straightened out. I also know that my attitude suffers when I am tired.

The laptop is nearly out of power, so I’m off to start the long Labor Day weekend with the beagles and my loved ones! Have a great one.

Day of Betrayal

Fall is just around the corner. It is my favorite time of year. I love it when the morning air begins to get crisp and cool. I watch each tree with anticipation of the changing colors. I can’t wait for the fall festivals, taking photos on the blueridge parkway, and heading into the mountains for fresh apples and cider.

Normally, fall is always a fun time at home for us. Since moving to North Carolina from Florida, one of the things we delight in is having a change of season. We usually have lots of wine-making activities and love looking for sugar maples at the peak of their color. Robbie’s sister usually comes for a visit as well.

It was most likely September of last year when the cancer began its journey with me. I remember feeling a little tired, but assumed it was work-related. I was in the process of taking on a new role, and was feeling a bit overwhelmed. I remember going to Blowing Rock with Robbie’s sister and having the funky ear-ache/throat “thing” that just wouldn’t go away. I’m not sure when to celebrate my cancerversary. Some people commemerate the day they were diagnosed. Others celebrate the day they were declared NED (no evidence of disease). I think those are both significant dates in my history now. But I really wish I could nail down that date when my body decided to go rogue and started to create destroyer cells. I would call it something melodramatic such as “Day of Betrayal”.

And had you suggested during that time that I might have cancer, I would have laughed at you. Probably 90% of people diagnosed NEVER believed it would happen to them. I think the few folks that did think it might happen probably had a family history or are the type of person that is paranoid regularly that they are getting some sort of disease read about online.

Speaking of paranoia, I have been going through a phase where I think everyone has cancer. Be careful to cough or complain of any ailment in my vicinity. Give me ten minutes, and I could get you good and terrified. At various points during the month, I’ve tried to tell my husband he might have cancer. I also suggested that maybe the dog has cancer. How have you been feeling? Have you been to the Doctor lately? I am over-educated about cancer at this point. I know even the most remote symptoms.

In other cancer news, the hair is looking less like that of a chia pet. My husband finally said to me this weekend “you know…maybe you should try some mousse or gel or something…” I have been avoiding hair “products” because new hair can be delicate. But seriously, it was standing straight up. I looked freshly terrified all the time. So I bought some sort of cross between a gel and a mousse on Saturday. I can’t remember exactly what it was called. But it does seem to have tamed the crazy a little.

Life is busy right now, but in a good way. Busy is a distraction, and the more distracted I am, the faster time will pass by. And the more time that passes by, the more distance I can put between me and my annoying companion.

Giving Back

A 5K/10K trail challenge was held today at the US National Whitewater Center in Charlotte to support the leukemia and lymphoma society. Several folks at work put together a team to participate in the 5K race, and a few of us also volunteered at the event.

Volunteers had to show up at 6:30 AM, which meant I needed to leave my house at 5:30 AM. Throw in the challenge of feeding and giving a shot to the diabetic dog prior to leaving the house, and that meant we had to get up at 4:45 AM. The alarm didn’t go off, but luckily I woke up shortly after five and with some serious rushing we managed to arrive to the whitewater center on-time.

Robbie and I were assigned the water and banana table along with several other volunteers. It didn’t feel like we did much, but someone has to do even the little things to make these types of events a success.

The Team from work was amazing. Our team placed first in the 5K for a mixed team. Additionally, a co-worker walked the 5K with a baby on her back. Impressive, indeed! We all wore shirts designed by Bernie, our graphic artist, and they were awesome. I am so in love with this shirt. Another co-worker ordered purple terrycloth headbands to match. We looked awesome. I was very touched that they choose to support this event – it meant a lot to me. I work with great people and their actions remind me of this often. My sincerest gratitude goes out to Leslie, Bernie, Karen, Sarah, Courtney, Grant, George, and Ricardo.

Next year, if they do the race again, I will do the 5K. I felt lazy for not doing it this year. I felt inspired by all the folks who participated. It was great to cheer everyone on at the finish line.

Ha, cancer! You delivered a fabulous day. Take that!

Wigging Out to a Syncopated Beat

I’ve said goodbye to the wigs. I now feel like I appear as a deranged mental patient who got a hold of a pair of clippers. No one in their right mind would select this as a hair style, but as the saying goes “It will grow.”

With the super-short hair, I feel like I’m holding up a big banner that says “I had cancer!” With the wig, I could pass for normal in crowds and I didn’t constantly feel like I was displaying the fact that I had cancer. Even though I blog about it, I feel like it’s a very personal thing. Sometimes you just want to appear normal. With my hair on display, I feel like I’m flaunting it for the world to see. This whole discussion shows how self-centered I am in that I believe everyone I meet cares about my hair, or lack thereof.

I am trying to find my rhythm. Everyone else seems to be on the same sheet of music. I seem to be working off of something a bit more syncopated. In music, syncopation is defined as the shifting of the nomal accent, usually by stressing the normally unaccented beats. Stevie Wonder was famous for this – Superstition is a great example. Syncopation can be awesome. But I feel like I’m humming my syncopated tune, while everyone else is nodding their heads to strong classic rock beat!

I also find myself in a sea of people that are living life and are excited about the day-to-day things that happen. I am having a hard time getting energized about things that aren’t life or death. And in a way, this is awesome. I’ve been given a perspective that has allowed me to step back and see what is important and to not sweat the small stuff. But there is a flip side to this. If I’m not getting excited about the day-to-day things, then that means I’m not living life to it’s fullest.

Life after cancer is a combination of grief and post-traumatic stress disorder (PTSD). I feel like I’m grieving for the life I had pre-cancer. I was naïve and happy and oblivious to my own mortality. I will never have that again, and that sucks. When a person is in danger, it is natural to feel afraid. When someone has PTSD, the reaction to danger becomes changed, and you can feel stressed and frightened even when you are no longer in danger. I still fear cancer. I fear it coming back. My fear is unrational at this point, but I still feel it. Sometimes it overwhelms me. Other times, I’m able to let it fade into the background.

To sum it up, this mental patient is coping the best I can. Each day that passes is another day that I don’t have cancer. And as the old proverb says, I have to stop letting yesterday use up too much of today.

Crocodile Tears

Before I went to sleep last night, I was lying in bed reading about the treatment protocol for recurring Non-Hodgkin’s Lymphoma. I wanted to make sure I had an understanding of the treatment protocol in case I received negative results today. This resulted in horrible nightmares about having cancer.

I tried to start the day with a good outlook. I stopped at Starbucks for coffee and then began my drive to Charlotte. I could feel tension in my whole body and I couldn’t get my mind off of the upcoming appointment. At one point I began to cry, but I managed to compose myself by the time I got to work.

It was a good day at the office. Bernie brought me breakfast. I then went to lunch with the ladies at the office where we brainstormed T-shirt ideas for the upcoming race benefiting the leukemia and lymphoma society. When we returned to the office, we had a little Birthday party with flourless chocolate cake made by Karen – complete with candles and pink balloons!

Afterwards I started the drive back to Hickory for my oncology appointment. My chest felt tight, and I kept taking deep breaths to shake the tension. They took my vitals, and my blood pressure was high. It hasn’t been high at home, and I explained that I was feeling a bit of anxiety about the appointment. She said that was understandable. They were running behind, so they sent me back to the waiting room. Eventually I was called back. The technician that called me back was the same technician that I freaked out on during my first visit when I had the bone marrow draw. He told me to go ahead and put on a gown on my top half. This totally freaked me out because I usually don’t have to put on a gown.

Then I waited for what seemed like the longest 15 minutes of my life. Finally the mid-level (Jr. level doctor who does the initial exam) comes in and says “PET Scan looked great. How have you been feeling?” I immediately break into sobs. I felt like my body had been wrapped very tightly in ropes, and that they were all at once released. I explained that the waiting has been agony. I told her that while you are fighting cancer you feel like you’re doing something, but the waiting after the fact is brutal. I told her that I felt helpless. She smiled and said my reaction was actually very normal. She said it’s completely expected that I worry over every ache and pain and that I have some anxiety about the scans and follow-up. She handed me tissue and congratulated me.

I waited about another 15 minutes to see the actually oncologist. He too said that the scan looked great. He said that we’d do another PET Scan and follow-up in 3 to 4 months and to call in the meantime with any questions or concerns.

So 39? Not such a bad Birthday. I am taking tomorrow off for some de-compression time and will be spending the day relaxing and thinking about the future. It seems just a bit brighter.

Don't Come Around Now, You're Not Welcome Anymore

This week brings my 39th Birthday. There was a time that I was feeling depressed about this Birthday. After all, once you hit 39 it’s all downhill. It’s all wrinkles and senility and gray hair. But that line of thinking was pre-cancer. Another Birthday means I’m still alive and kicking. My 38th year will hopefully be known as the year I kicked cancer’s ass. And each future Birthday means I’ve managed to fend off the reaper another year.

I had my PET Scan today. It was my fourth one. My last one was in March. I had forgotten it was so long ago. The previous Scan was just after my last chemotherapy treatment, but just before radiation. My radiation ended in late May, so cancer has had two months post any type of treatment to re-invade. As I sat there before my scan, I couldn’t help but to think back to my previous scans. The first two were gray wintery days. I remember looking out the window and thinking that the weather certainly matched my mood. Those were the worst of days. The first scan was just after I had been diagnosed, and I was finding out the extent of the cancer. The second scan was after three chemo treatments. The brutality of chemo had started to take a toll on my mental state. I kept a brave face, but I was tired and scared.

Today was a beautiful sunny day. I chatted with Joe and Cheryl and met the new nuclear technician in training. The staff at the PET center have become familiar faces that bring a bit of comfort. The mood was light and cheerful. It was as if we were old friends getting together for lunch and catching up. The Scan went fine and I’ll get the results from my oncologist on Thursday afternoon. I am hoping for an all clear – it would be the ultimate birthday present.

And although I can’t help but to feel a little fear about the results, I am facing the future with the knowledge that I can handle whatever comes my way. If it comes back, I will fight it with everything I have. I want to see my 40th Birthday. I am counting the days until I turn 50. I want to get old. I want to forget where I put my teeth.

Thank you to the American Cancer Society for more Birthdays. It is organizations like you that provide the funding and awareness that makes it possible for more treatments and cures.

Keep your fingers crossed for me on Thursday! I'm hoping to be celebrating on Friday!

Talking to Myself and Getting Old

I am making my usual arrangements to prepare for my upcoming oncology related appointments.

First, I called to change the appointment time. I always change the appointment time. I am not trying to be difficult, though I am sure that my file says “patient is difficult about scheduling.” They scheduled my lab work for 11:00 AM. I ALWAYS ask for early or late appointments. I know that some cancer patients are retired and are able to come by anytime, but that isn’t me. I am a busy girl, and I have things to do! Cancer appointments are never a single appointment, and I can’t devote three days to middle-of-the-day appointments. Luckily, they were able to bump my lab work to 8:45 AM.

Secondly, I think I need a new PET Scan outfit. I have to wear clothes without clasps or zippers – so basically gym clothes. I had my winter “PET Scan” outfit, but I think I need a warmer weather outfit. The room is always cold though, so no shorts. And crazy socks are a must. Also, I can’t wear a bra during my PET, so I don’t want a top that is too revealing. No amount of revealing clothing will improve the results. I must shop this weekend.

My last appointment is the meeting with the Doctor to discuss results. I think I have mentioned before that he is not chatty. So if I don’t specifically ask questions, he might say something vague like “Nothing too concerning.” With him, it’s critically important to make a list of questions. Important things such as “Can I get some more of that Ativan?” “Why did my hair not turn red? I wanted it to grow back red!” “Can you write me a note to give me a few months off for medical reasons?” Ok, so those aren’t my real questions. But I do need to get my thoughts together concerning maintenance therapy, primary care vs. oncologist, etc.

The good news is, all of these appointments will be finished on August 4th, just in time for my Birthday on the 5th! I’m a little excited about my Birthday this year – there was a moment or two this year when I wondered if I would make it to celebrate the big 29th Birthday… ha ha ha …

The Wheel in the Sky Keeps on Turning

I’ve started this post about three times now and it just isn’t coming together. It ends up being a mish mash of too many thoughts, and doesn’t follow a logical flow. But maybe that’s the point. That’s how I’m feeling right now. I feel disjointed and confused and it’s coming across in my writing.

This upcoming week starts the triple-header of appointments that makes up my three-month post cancer follow-up. I have a full panel of bloodwork, a PET Scan, and an appointment with the oncologist to discuss the results. I will be so happy to get this over with and move forward. It feels like a monkey on my back right now. The tests are only confirming what is or isn’t going on with me, so worrying about the actual tests is stupid on my part. But logic isn’t in control right now.

This week also brings the four year anniversary of my Dad’s passing. I’m sad, of course. I miss him. And I also feel sad because this is an even rougher week for my Mom. That being said, I feel like I need to not let the sadness consume me. I have fought like Hell this past year to survive. That is what he would have wanted and I know somewhere he’s proud of me. So for him, I will make sure I spend some time doing things he would appreciate. I will make my own pickles, eat a little too much cake, watch a sci-fi movie with the volume way too loud, and laugh with my whole body. Because that is one of the things I miss the most about him – the full body belly laugh.

My cousin Lisa and her family came through Hickory on their way back from the beach. It was great to have them visit. Some of my best childhood memories were with my cousins. We hadn’t talked in years, and just recently got reconnected. It was fun to have the sound of her children filling the house. My dogs are not used to being around “little people” and are still trying to recover from all the excitement! I am enjoying getting to know her as a grown-up, though I still picture us as grubby kids getting into trouble!

In other news, I am having a hard time with the whole daily grind. It seems overwhelming at times. The work week is filled with work, vet appointments for Zoe, dental appointments, construction in our backyard, and errands. It seems like I am racing around constantly. Part of this stress probably stems from PMS and this ungodly heat wave we’ve been having. Chemotherapy sent my body into temporarily false menopause, and that just ended. So I think I’m experiencing about six months of PMS all at once.

To sum it up, I feel happy, scared, overwhelmed, and bitchy. But I am here to feel it, and for that I am grateful.

The Girl Who Lived

It is hot. It is in the 90s almost every day. And it’s humid. Sometimes I have flashbacks that I’m living in Florida again. Wearing a wig in this heat is a real pain in the ass. I’ve got a little hair now, so more and more I am just going without the wig. I do carry it with me, but it’s usually on my desk, in my purse, or in the car on the passenger’s seat.

The other morning I was driving through Starbucks with my wig sitting in the passenger’s seat. As the drive-thru guy handed out my coffee he proclaimed “Is that your little dog?!?”, in reference to the wig. Had I been quick on my feet, I would have said yes and would have asked him if he wanted to pet it. But I wasn’t, and just responded with a no and a chuckle.

Cancer still mentally consumes my thoughts far too much. I am trying to move forward with life. But it’s more difficult than I anticipated. It’s like I’m waiting for the other shoe to drop. I am anxiously awaiting my next scan and follow-up appointment. It’s supposed to be scheduled for late July/early August. I know that the cancer was gone right after the chemo, and that the radiation was another measure to keep it away. Now that some time has passed, it will be comforting to get confirmation that the plan really worked and that it really has stayed gone.

I still participate in a website/online community of cancer bloggers. I check in on the status of my fellow non-hodgkins lymphoma (NHL) friends regularly. Some are ahead of me in their progress – for example, one just got her first haircut post-chemo! Others are receiving chemotherapy or just finishing up. But so far, the folks I’ve come to know very well in our little group are alive and kicking. And that brings a lot of comfort. Recently, a new woman joined that has had NHL for many years. She is on about her fifth type of chemotherapy. I know that not everyone is cured, but now having someone in my little group who isn’t doing as well is scary for me. It reminds me that cancer can come back, and not everyone has a happy ending.

I try not to talk about this too much. After all, I’m the girl who lived! Why am I not running through the streets and shouting from the rooftops? And trust me, 95% of the time I am feeling nothing but gratitude and joy for the life I have. I believe I am the luckiest girl in the world. But I can’t ignore the fact that just 9 months ago I was diagnosed with a disease that had the potential to be terminal. And I spent 7 months going through hell to get rid of it. It’s hard to just bounce back and pretend it never happened. No matter how hard I try.

I think it is only natural to experience a bit of post-traumatic stress. And I don’t think it’s unreasonable that I feel this way. After all, it’s not even two full months after my last radiation treatment.

Only time can heal these feelings. Time and champagne. Because who can be melancholy while drinking champagne?

Let Freedom Ring

This week I went to see my radiation oncologist for my post-radiation follow-up appointment. It was a quick visit. I reported that I was experiencing no further side-effects from radiation. I was told by the radiation oncologist that unless I felt some sort of need, that I was released from their care considering my regular oncologist would be performing my follow-up scans and any necessary maintenance treatment. It is nice to have one less doctor. One step closer to freedom from cancer!

I do still have a bit of post-cancer anxiety. Anyone who has been in this situation will probably attest to having a bit of paranoia that the cancer will return. Early this week I had a little lump under my right armpit. For about two days I was terrified that it was a swollen lymph node and had planned on calling my oncologist by the end of the week if it didn’t go away. It has since disappeared and was probably a pimple or a minor sweat gland issue. Not unexpected with the hormonal changes that happen with chemotherapy and new hair growth in the area. And pre-cancer, I would not have given it a second thought. But these are different times now.

In the cancer community, we have coined a term that describes how we feel as we approach our next PET Scan appointment: Scanxiety. We all anxiously await our next scan to hear the words that are golden: No Evidence of Disease (NED).

In the meantime though, I have to focus on the business of living! This week has been good in that regard. Number one on that list is the joy that has been brought in watching my dear sweet Zoe bounce back after being diagnosed with diabetes. I have watched her go from being lethargic and achy and uninterested in anything, to being playful and full of life. The insulin is working and it has given her a spark that has been missing for far too long!

This week I also served as a juror. And although I felt bad that I was missing work yet again, I have to admit that I really enjoyed the experience. It was a civil case that lasted about four days. I liked the chance to learn about the process. I was also fascinated that twelve people who had never met could work together so well to agree on outcome.

I am off to enjoy the three day weekend. I know that this year, the thoughts of independence and freedom have a different meaning for me.

Happy holiday to you and yours!

Dog Days of Summer

It’s been an interesting week. But it has ended relatively well.

My dear sweet beagle Zoe has not been feeling well. We took her in to get her teeth cleaned and to have a cyst removed from her eye a few weeks ago, and while she was there we mentioned that she has been a bit slow moving and achy. They did an X-ray of her hips and spine while she was there, but they couldn’t find any problems.

The vet thought it could be a type of soft-tissue arthritis and prescribed some medication. The day after we brought her home she seemed energetic and we assumed it was the pills that were prescribed. But as the days went by, she started to feel bad again. In fact, it appeared to be getting worse.

In addition to her achiness, she also had a red spot develop on her chest. It looked like a rash or a burn about the size of a fist. So I called the vet’s office and Robbie took in her in for a visit about the chest wound as well as the continued achiness. They ran a bunch of urine and bloodwork while she was at the office. Her blood glucose was around 600 which is REALLY high, but they felt like that was a mistake and sent it out to a lab to have them check it as well. They called a few days later and confirmed that her blood sugar was indeed high, and that she was definitely diabetic. She probably felt better after the first visit because we had fasted her before the surgery and her blood sugar dropped. The chest wound ended up being some sort of bizarre burn. We are assuming she laid on something hot in the yard.

So Friday we dropped her off so they could do a “curve”. They kept her all day and monitored her glucose throughout the day after giving her an initial dose on insulin. Unfortunately her curve didn’t really curve much. Her glucose stayed above five hundred. At the end of the day we were trained on how to inject insulin and were given instructions on what to do over the weekend. Tuesday they are hoping that her blood sugar has dropped enough so that they can do a proper curve.

She has been feeling somewhat better over the weekend. She is still lethargic at times, but now has bursts of energy that she wasn’t exhibiting before. She ran around the yard quite a bit, and has been playing both in the yard and in the house. It is nice to have hope that she can be like this all the time in the future once we get this regulated a bit. Dogs are so full of unconditional love, and it breaks my heart when one of my girls isn't feeling well. They can't say "I feel like crap! Help me!" So you have to try to sense how they feel. It can be difficult, especially when they are good-natured and try to hide their pain.

As far as I go, I’ve been feeling good. Most days I am completely back to normal. I notice if I don’t get enough sleep over several days that I start to feel run down, but I think everybody feels that way. I am also able to fully taste fruit again and that has been wonderful – that was really my last taste sensation to return. I am still a little sensitive to super-tangy things and have to be a bit careful or I get a little bit of a gag reflex.

July will bring my next PET Scan and a follow-up with my oncologist. I’m anxious to get an “all-clear”. As I’ve said before, every day that passes lessens my chances of recurrence.

Hope your summer is going well. Be sure to hug your pets!

A Gift

Tonight I was driving home from my Mom’s house right at dusk after a lovely dinner. I had wore my wig all day today and had finally had enough of it. I pulled it off and threw it on the passenger’s seat. I ran my fingers across the top of my head to feel the baby soft fuzz that adorns the top of my head. Not long now until I can be done with the wig. The fireflies were just coming out and they were sparkling all along the winding highway as I drove along. I turned on the radio and U2’s “I Still Haven’t Found What I’m Looking For” was playing. I saw a bunny dart into the weeds as I drove by.

The cancer experience gives you one gift. And that gift is to appreciate the moments. It is those few minutes in your day where the world comes together in a perfect way. It is about remembering to smile and take it in while driving along a winding road lined with fireflies.

Better Days

It’s been over two weeks since my last radiation treatment. Life has improved ten-fold. I can finally eat and drink pretty much normally. The only remaining side effect is a little dryness in the throat – mostly in the evenings. I am also drug free! No more drugs needed to combat the many side effects of cancer treatment.

I don’t see another Doctor until the very end of June, and that is just a follow-up with the radiation oncologist. In July, I will be scheduled for another PET Scan, bloodwork, and a follow-up appointment with my main oncologist. Every day that goes by and every scan that comes back clean lessens my chance for recurrence. So for once, time is on my side.

This is the best I’ve felt since October of last year. It’s hard to believe it has been that long. Feeling unwell is a gradual thing, and you don’t really realize how bad you really felt until you start to feel better. The same with the chemo “fog”. I thought I was firing on all cylinders during my treatment, but as my ability to concentrate and general well-being improves I am starting to realize that maybe I was a bit off.

A couple of co-workers approached me about a 5K/10K trail challenge in August to raise money for the leukemia and lymphoma society. They propose that for our office summer picnic that employees who want to can participate in the race and that we could then have our picnic immediately following the event. I was humbled that they wanted to do it, and am very excited about participating. I want to get in better shape and this is a good short-term goal to kick-start my effort. This weekend I need to unbury the treadmill!

I did lose a little weight during radiation, and actually because I was eating such small meals during radiation I think it’s helped my stomach to shrink a little. I’m eating enough, but I’m not overeating like I was before. I hope to continue this trend.

I have found that some of my taste/food preferences have changed during this whole thing. I’m not sure if that is a temporary or permanent thing. For example, I can barely drink a soda. I don’t like the taste or the carbonation. I think I want fried food, but when I eat it I don’t like the mouth feel at all and usually end up just picking at it. Multi-texture foods are a real treat! For example, I want Subway all the time. It’s the coolness and all the various textures. At work last week, for a catered lunch there was meatloaf and mashed potatoes. It just seemed too heavy and rich. I would have rather had a sandwich. I do have a serious soft spot for ice cream though – I think because I still have some dryness. That and because it’s been in the 90s for the last two weeks. Seriously, it’s barely June!

So all and all, life is pretty darn good. If I could just get my hair to grow faster! But that’s such a little thing in the grand scheme of things. Hopefully I’ll have enough hair by my Birthday (August) to be able to go out without headgear. If not, I’ll just put on a big tiara.

There and Back Again

Back in November, I called to make a Doctor’s appointment in order to figure out what was going on with this pesky swollen lymph node. Unfortunately I already had a Dentist appointment for the exact same time as they wanted to make the Doctor’s appointment. I had recently had a root canal and needed to go for the follow-up so they could cap the tooth. I cancelled the dental appointment with every intention to go back to the dentist to finish up the root canal.

Well if you are reading this blog, you know what become of the swollen lymph node. And once you start chemotherapy and radiation it is not a good idea to go to the dentist. Because your immunity is decreased, they don’t want a bunch of mouth bacteria stirred up. ANY type of infection can be serious during treatment. In hindsight, I should’ve tried to have the dentist squeeze me in before chemotherapy started, but seriously, dental work was the last thing on my mind. So part deux of the root canal never happened.

And today, just two days after I finally got my ability to eat back, the dead tooth cracks and falls apart in my mouth while trying to each a fried clam. It figures. And the irony of it is that I was going to call the dentist sometime during the next week or so to make an appointment. One of my co-workers had recently told me that the radiation would make all my teeth fall out. I guess I should’ve listened! In all seriousness, I did not have radiation to my mouth, and though some saliva issues may have caused a few minor dental problems I don’t believe that is why my tooth broke apart. I just had a long overdue need to see the dentist.

Even with the tooth issue, it has been a really good weekend. Robbie and I spent the last four days in a cabin in the mountains. Robbie asked me what I liked the most about our getaway, and I said the quiet. And I don’t mean just the quiet of the wilderness, but the quiet that comes with no responsibility. It was the first time since all of this craziness began that I really had time to digest what had happened and to deal with it on an emotional level.

There is definitely a shift that occurs when you go from cancer fighter to cancer survivor. In my opinion to fight cancer, you need to be in battle mode. There isn’t much time to reflect. It’s all about doing everything you can to win the fight.

But now that the fight is over, I do have the time to make a decision about who I want to be. And to be honest, I don’t feel having a big celebration. I feel grateful and exhausted. I feel like I need to find ways to give back to others going through this type of experience through blogging and participation in discussion groups. I need to participate in organizations that raise money to find better treatment and cures.

But I do not want to gloat or showboat. Cancer was a bad-ass opponent. And just because I won this time, it doesn’t mean that I’d win the next round. I do not want to tempt fate. I’m going to lay low and hope that she just passes me on by and lets me tell my tale of how I went there and back again and lived to tell the harrowing tale.

Awake

Sleep is not coming easy for me lately. I think it is a combination of factors.

First, the pain. Yes, I am going to talk about the throat pain again. I have lived a pretty painless existence up until now. I wish I could have continued with my blissful ignorance. It has been a full two weeks of pain now. It is grating on my last nerve.

Secondly, I gave up my anti-anxiety medication. It was a fabulous sleep-aid. It quieted all the crazy thoughts that would fill my head each night. But now that cancer treatment is over, I need to get back to some sort of normal. And that means getting rid of the drugs.

Stopping the anti-anxiety pills have unfortunately opened me up to really feeling the day-to-day stress. From medical bills that require calls to the insurance company (most get resolved - mainly mix ups) to fire drills at work (of which there have been an abnormally high amount of lately) I am actually feeling the stress instead of being able to let it roll.

I sort of wish I had really taken time off while undergoing treatment. I feel like I put more stress on myself than I really should have. Last week I rushed from radiation to work, only to work all day in pain. There was one day last week that I was so worn out that I sat outside on the patio and napped for a few minutes.

Part of the problem is that my treatment has gone on for so long. I mean seriously, how much patience can I expect people to have with me? And this little bout of radiation was supposed to be a breeze. And that has hardly been the case. I hope every single day that I will not have to go through this again ever. Because just that thought alone can keep me awake at night.

At least we are getting away for some rest and relaxation later this week. I need quality sleep. And a fresh perspective.

- Posted using BlogPress from my iPad

Rapture

There was a rumor that today would be the end of the world as we know it. To some extent the prediction was true. At least for me. My days of Doctor prescribed torture are complete. I don't see another Doctor until late June. My next scan isn't until July. I won't know what to do! I suppose I can just devote my attention to growing hair.

So now begins the healing. The radiation kicked my ass a bit. The nurse said it could be weeks until my throat feels better. Eating completely sucks. It tastes all wrong and it hurts. For the first time in my life I eat only for necessity. It has been a good life lesson, and I hope I can carry my respect for food forward as I am able to eat again. I am still a bit tired as well. Only time will help.

I need to heal mentally as well. I still get overwhelmed when I think about this last six months. My life took a crazy turn and I am on a different road now. I am finally in a place where I can take a moment to navigate and make sure I'm headed in the right direction.

Robbie and I are headed to a cabin in the Smokey Mountains later this week. I am looking forward to getting away with my best friend. As hard as this whole experience has been for me, it has been equally as difficult for him. Lots of fresh air, sleep, and solitude will serve us both well.

So for me, a world filled with poison and daily doses of radiation has ended and I feel fine!


- Posted using BlogPress from my iPad

Friday I'm in Love

Friday is my last day of radiation.

They let me double-up on radiation sessions yesterday so that I wouldn't need to come back next week for just one day. This will allow me six uninterrupted days of healing before we leave to go away for our weekend in the Smokey Mountains. This is much better than the three days I would've had.

It would be so nice to be able to eat a little solid food and partake in a glass of wine. I am going to keep my fingers crossed for super-fast healing.

Radiation has completely sucked since the middle of last week. I am so tired of yogurt, milk, soup, and all things liquid and mushy. I long for sandwiches, crusty bread, steak, and salad. At least the liquid hydrocodone has been helping with the pain. I can only take it in the evening though. It isn't conducive to driving or working.

I am not sure how people are able to handle chemotherapy and radiation simultaneously. I feel like such a wuss for complaining when I hear what others go through.

I just need to put on my brave face for two lousy days. I can do this.

- Posted using BlogPress from my iPad

No Pain, No Loss

I am experiencing the worst throat pain I have ever had.

I can only eat soft foods. Anything bigger than a very small bite and it feels like I am swallowing a piece of jagged gravel. The easiest things to eat are yogurt and applesauce. Things that are absolutely off the menu include chewy bread, chicken, steak, salad, and hard fruits.

I would’ve thought that I would just “drink” my calories – milkshakes, smoothies, etc. But that doesn’t work so well either. First, I can only drink small sips. A single small swallow at a time is about all I can do. Secondly, I’m finding that very cold beverages are actually harder to drink. Straws are helpful, although every time I go to the store I forget to pick them up for home.

I have weight to lose, so one would think I might be happy about this new “diet plan”. Unfortunately, there are a few kinks to this concept. The nurse specifically said to try not to lose weight during radiation. She said to make sure I get plenty of protein and that I stay hydrated. On Mondays I see the oncologist and they always check my weight. I’m hoping I’ve consumed enough to not have lost more weight than they find acceptable. When I weighed in last week I was already down a couple of pounds.

On Wednesday of last week I finally broke down and asked for something for the pain. I feel pain every single time I swallow. They prescribed a liquid version of hydrocodone. It doesn’t take the pain away completely, but it does take the edge off. I’ve been taking it very sparingly and in low doses.

I have six more days of radiation. The past week has been pretty rough. In some ways it seems worse than chemotherapy. I have to remember that this lasts a mere three weeks, whereas chemo was over four months. The pain associated with chemotherapy was tolerable – mainly aches and pains that could be mitigated with Tylenol. It was a generally dull pain that was intermittent. On the 1-10 pain scale, I would’ve put it at a 3.5 or 4. The pain of a swallow is about a 6 or 7. The hydrocodone takes it down to about a 3 or 4.

I am looking forward to May 26th. Robbie and I have a little post-cancer treatment vacation scheduled. We are heading to a cabin in the Smokey Mountains for a relaxing getaway. This has been a long process and it will be nice to get away from it all. I have an insanely busy week at work this week so hopefully it will make the time go quickly.

Magic Mouthwash my Ass

My throat hurts. A lot.

It started hurting last Friday. By Monday it was sore enough to ask the radiation oncologist for a remedy and he prescribed the very expensive “Magic Mouthwash”. But it made me hurl when I tried to use it, so I hesitate to try it again. Yesterday my throat was sore enough that I chewed all of my food to a state of mush to avoid any type of scraping in my throat.

Today I’m pondering whether food is even worth it. This pain is getting worse each day and I’m going to have to attempt to mitigate it. Tonight I am either going to try the mouthwash again, or the home remedy Robbie found on the Internet that consists of water, salt, and baking soda. I am hoping that maybe if I take an anti-nausea pill prior to gargling the world’s nastiest mouthwash that maybe I can control the gag reflex.

Eight more days of radiation. Eight very long days. Many apologies to those who cross my path during this time. I am having difficulty keeping my shiny attitude.

I Hate Vitamins

I’m halfway through radiation treatment. My mouth continues to be dry, but that isn’t too bad. I am trying to diligently drink fluids to keep my mouth moist. My taste buds are also out of whack, but I went through a lot of that while on chemotherapy so I’ve adjusted to that feeling.

Late last week I started to develop soreness when I swallow. This morning, my radiation oncologist prescribed “Magic Mouthwash”. This is actually a sucralfate compound mouthwash that has to be prepared by a compound pharmacy. Apparently it’s mixed to order. It can be swallowed and is supposed to help with the soreness. I just took the first dose, but I think I used it wrong. It says to swish in my mouth. So I swished. But it’s my throat that is sore, so I probably should have gargled. Next time I’ll gargle.

The oncologist said that I should expect continued discomfort. He said I may also have some hoarseness. The nurse said to try to eat softer, blander foods. They also said I may have problems with acidic foods like tomatoes and citrus and dense foods like steak. For now, I'm still eating normally while I can. Because eating soft bland foods will get old really quickly.

Apparently this whole throat thing caused me a bit of havoc this morning when trying to take my vitamin. I have been trying to be diligent about my vitamins because it’s supposed to help hair growth. Once in a while, when I take a multi-vitamin it makes me a little quesy if I take it on an empty stomach. I had eaten breakfast and had a dried fruit snack a few minutes before taking it so I didn’t think taking the vitamin would be an issue.

I took the vitamin, and it did feel a little funky going down my throat, but I thought I was fine. A few minutes later, I could still sort of taste the vitamin in the back of my mouth/throat. And then I had a passing thought that maybe it was a little nauseating, and it was a self-fulfilling prophecy. I had to immediately try not to think about it, because the second I would think about it I would gag and nearly heave. And unfortunately, I had just walked out to my car and didn’t have anything to drink to try to get rid of the taste. I cranked the cool air up to full blast and took deep breaths for about two or three minutes. The feeling finally subsided.

I ate lunch a few minutes later and managed to get rid of the taste and settle the nauseous feeling. I did find that my throat is a little worse today than over the weekend, and that I have to really chew into small easy-to-swallow bites.

In other news, my skin is also starting to get a little red. Radiation is starting to be a little annoying. Even if it is near the Starbucks.

Me and the Machine

Let me start by saying that so far, radiation is going well. I’ve had 4 out of 18 treatments and I can’t really complain. The only side effect has been a bit of dry mouth and a funky taste.

There is something about radiation that has made this whole experience a bit more authentic. While receiving chemotherapy, pretty much everything was done at the oncology center. I got to keep my clothes on, play games, and watch TV. I could wear hats and wigs, and bring snacks. And even though I was in a bed and had an IV, it wasn’t a hospital.

Radiation is every day (except weekends) at an actual hospital. Nothing makes an experience more real than doing it every single day. When I show up each morning I have to put on a hospital gown. Granted, I get to keep my pants and shoes on, but having that gown on still makes it seem a bit more daunting. Once I change, I sit in a small waiting room with my gown and my bald head. I usually don’t go out in public bald, so I feel very vulnerable sitting in my gown and with my ostrich-like head exposed.

Once I’m called back to the radiation area, I walk through a door that is about six inches thick. When the technicians get me settled they leave the room and then it’s just me and the machine. The machine re-positions during my treatment and it has a fluidness to it that makes it seem almost like a creature rather than a mere machine.

Those three minutes that I am alone with the machine are peaceful, yet agonizing. It’s early in the morning and I’m still waking up. It’s quiet and I’m usually somewhat covered with a blanket. The sounds of the machine are rhythmic and almost soothing. But then my mind starts to fill with thoughts as the machine rotates around me. I start to think about the fact that I can’t move and that it is very uncomfortable. And I start to think about the radiation that is being administered. I can’t see or feel it, but its presence surrounds me and I almost feel smothered. But by the time the panic starts to set in, the experience ends. The technicians show up and they set me free.

I quickly change into my clothes and then I walk out to my reserved parking space. And I usually walk with a bit of spring in my step because the vulnerable feeling has passed. It is not even 8 AM and I’ve already kicked a little ass.

Kate, William, and Starbucks

Radiation started on Thursday. Things have gone extremely smoothly. The simulation was worse than the actual therapy. For the last two mornings I’ve thrown on a gown, they’ve snapped my head down underneath the mask, strapped down my shoulders, lined me up, and cranked up the machine! The radiation itself probably takes less than two minutes and I don’t feel a thing. I was hoping I’d be able to see some sort of beam or ray, but there is nothing. Just a noisy machine.

So far, no significant side effects. I would swear the area they radiated felt a little warm at times during the morning, but that could be my imagination. My tolerance of red wine seems to have waned just a little. I had just gotten to the point where I was enjoying wine again, but I went to a tasting like night and could not tolerate more than a sip or two of the red wines. Radiation to the chest can cause temporary heart burn and throat issues so that is not surprising. Lastly, my mouth has felt dry today. But the air is dry, so I’m not sure if that is the environment or the radiation.

They have been getting me in and out for my 7:30 AM appointment very quickly. I think this morning my visit was 13 minutes total. And that includes watching royal wedding coverage with the radiation staff for a moment. I’ve been able to get to work between 9 and 9:15 AM the last two days. And that is even after taking advantage of what I consider a fabulous perk – the hospital is just down the street from Starbucks! So each morning I’ve been able to grab coffee for my commute into Charlotte. I think starting the day with radiation earns me the right to be a little frivolous!

I’m “off” for the weekend – no more treatments until Monday. The hubbie has agreed to get up with the evil beagles so I’m sleeping in late tomorrow!

Simulation

Today I had my final radiation simulation – tomorrow we go live.

This appointment went much better than Monday’s session. We literally walked through exactly what would happen at each appointment. The process is pretty streamlined. There is a small waiting area for the radiation patients, and it has a computer where you can do self-check-in. Next you can go ahead and find a dressing room to put on a gown. I am lucky in that I only have to undress my top half. So I can show off all kinds of great footwear during my radiation.

Today, the technicians did some calibration (i.e., table height, centering, alignment, etc.) as well as documentation, which translates to writing all over my neck and chest with black marker. Luckily I can wash off all but one marking which is luckily normally covered by a shirt. They did give me a butterfly sticker to help preserve the marking.

As I was lying there in my mask, they also gave me some fabulous news. They are giving me the 7:30 AM timeslot for the duration of my treatment. This has relieved quite a bit of stress for me – I was very worried about trying to leave work each day at 2:15 to make an afternoon appointment. This makes me sound like a workaholic. I’m not really, I just long for normalcy and to be able to really contribute at work again.

I feel pretty calm about radiation. From my understanding, side effects won’t really start until around the second week. And even then, they are primarily localized to the neck and chest. My biggest concern is fatigue. I am hoping to just truck right through this without a bunch of down time. I will listen to my body and do what I need to do, but in my opinion positive thinking can go a long ways in how you feel.

The 18 day countdown to the end of treatment begins. Geez, that’s shorter than one cycle of chemotherapy. I can do this!

Clarice

After today’s experience at radiation, I feel a bit like Hannibal Lecter.

Today was Part I of radiation set-up. I showed up to the Medical Center to find that they have designated parking spaces for the radiation oncology patients. Finally, a perk. Not only that, but I have the door code that allows me to come in through a locked entrance to the hospital. I was feeling pretty lucky at this point – I think they do this so that you show up with a good attitude. It is in their best interest.

Once checked in for my appointment, I was given MORE bad news. Apparently radiation set-up takes two separate appointments, and the second appointment will also be in the middle of the day later this week. It is as if I didn’t take the time to explain that I work in Charlotte and that midday appointments do not work for me.

Next the two radiation techs come out to greet me and to escort me to the CT Scan area. Part of the set-up process is to do positioning in the CT room. Once we arrived in the scan room, I had to undress (top half only) and remove my hair (wig)! I was given a sheet to cover up with, but felt awkward with my bald head. The awkwardness became less important after just a moment because they began to torture me.

Next, I was positioned on the CT table with my neck and head positioned on a plastic piece that forced me to look up and expose my neck. Me not moving during my radiation treatment seems to be extremely important. So important, that they take the time to create a custom mask to go over my face to keep me in position. The mask is a white plastic-type mesh that is warmed so that it becomes stretchy. As it cools, it holds the shape of my face. It is placed over my face and is attached to a board that is underneath my body on the CT table. It is very uncomfortable and awkward. I was tempted to say “Clarice, do you hear the screaming…?” But I decided to save that for a future visit. Oh, good news! I get to keep the mask when this is all done. Wow, the perks were coming out of the woodwork today.

Next they wanted to ensure that I held my shoulders as low as possible. So I was given a fabric-type rope to grasp with both hands, and then that rope was stretched down below my feet. It was extremely taunt and felt like some weird stretch they would have you do at the gym.

Finally, after much schoo-ching (this is apparently an official medical term used by radiation techs and gynecologists alike) and adjusting it was time for the scan. Except the scan table was acting up, so I had to get up, they had to figure out what was wrong, and then we did it all over again.

Once the scan was complete, the two technicians, the Radiation oncologist, and some other guy came and stood over my masked face and talked in what seemed like a foreign language for ten minutes, occasionally poking my sternum and my clavicle bones.

They only made one mark on me today. It’s a blue line right up the middle of my chest. Apparently I need to try not to wash it off between now and Wednesday. I don’t know exactly what we’ll be doing Wednesday, but if it’s as much fun as today I’m not sure I’ll be able to contain myself. I hear that there will be X-Rays and drawings on my body involved. Good times.

My actually radiation starts on Thursday. It will be at 3:30 each day, except for Friday. Apparently that is the only time slot they had available. Schedule-wise, that totally sucks. That means I’ll have to leave the office everyday by 2:15. And they close early on Friday. If they make it at 11:30 on Fridays, I will hurt somebody. I am totally annoyed. If this wasn’t something life-saving and important, I would totally bail.

So that was my day. Fun.

Bawk Bawk!

Today is Easter. Another holiday spent thinking about cancer treatment. I thought I would be free of these chains by now.

It was a wonderful weekend filled with family, sunshine, wine, and great food. It was great having Rosalie here, and it was nice to have my Mom here as a resident rather than a visitor. She outdid herself with providing us fabulous food all weekend. I was also finally able to drink wine without the acidity causing problems. We even colored eggs!

But as great as the weekend was, tomorrow starts the journey into radiation with my “set-up” appointment. They will do blocking tomorrow to ensure that I am in exactly the same position each and every time. I don’t know what all this entails, but they mentioned something about a face mask to hold my head. This should be interesting. I will have 18 sessions, and I’m not sure if tomorrow includes my first session. I am also not sure if I start right away or if there will be a delay. I feel like I’m always waiting for answers.

I also feel a little additional anxiety because we are crazy busy at work right now. I’m hoping, as requested, I can get early or late appointments for radiation, and that the fatigue will be minimal. I am tired of always feeling like the team I work with is putting in 110% and I’m always fighting to just keep up. I miss being an “A” Player.

Rosalie was reading my booklet “Radiation and You” and it mentioned that alcohol may again be off the menu during radiation. Bummer. In fact, because my radiation will be focused on my throat and upper chest, I could have problems eating or drinking due to swelling and pain in my throat. I hope that this is a worst case scenario and that like chemotherapy, not everyone will have all the side effects that are disclosed.

I am having a bit of post cancer anxiety related to recurrence. I find myself feeling my neck for swelling pretty much every day. I know it’s currently gone, but I really scared of it coming back. I am hoping that maybe the radiation will give me a little extra peace-of-mind.