Friday, April 29, 2011

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!

Wednesday, April 27, 2011


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!

Monday, April 25, 2011


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.

Sunday, April 24, 2011

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.

Tuesday, April 19, 2011

A Day in the Life

Last night I couldn’t sleep very well. I was dreading today’s radiation oncology appointment and it was causing a little anxiety. I tossed and turned, and finally headed to the guest room to sleep so that I wouldn’t keep Robbie and the dogs awake. Robbie is a deep sleeper, and doesn’t hear when the dogs get up in the middle of the night. And because I had closed the door to the guest room, I didn’t hear the dog get up either.

When the alarm went off this morning, Robbie came to wake me and then proceeded to get ready for work. I headed downstairs to let the dogs out and was greeted by a whole lot of mess involving multiple rooms. My sweet Zoe was not well and had a very long night. Not the best way to start the day.

My appointment wasn’t until 10 AM and since I hadn’t slept very well, I decided to go back to sleep for an hour or so. When I got up again, I found even more “messes”. Fabulous. I again cleaned up the mess and then proceeded to head to my appointment.

The radiation oncology center is at the hospital. When I made the appointment, I was told to head directly to the department desk. But when I arrived no one was there. So I sat in the waiting room for a few minutes and another patient and a nurse walked up. The nurse said that we needed to head to registration in the hospital lobby. So I headed out to the lobby and waited in line at registration. When I finally got to the desk, she tells me that I don’t need to register and just to head on back to the department. So I proceed back to the desk, and this time there was someone from the department. She apologized – she thought she heard someone send me away and didn’t catch me in time.

Unfortunately, the news was what I expected. They want me to do a course of radiation. The Doctor said it decreased my overall chances of cancer recurrence by 10-15%. I completely understand, and I am going to do the radiation. But I would be lying if I said I was happy. They have scheduled me to come in on Monday to do my practice-run.

At this point in the day it was only 11 AM. I had cleaned up dog poop in four rooms and was told that I need to have radiation. One could say a bad tone was set for the day. I headed to work, and my exasperated state-of-mind made me feel overwhelmed by my to-do list. Everything seemed overwhelming and I felt like I was fighting back tears for a good bit of the day. I will try to explain why without sounding whiny, but really this is just a big ol’ whine fest.

I have been trying to balance work and appointments and some sort of home life, all while feeling constantly exhausted since Thanksgiving. And for just a moment I thought all that was over. I blame this emotional breakdown on the oncologist, who when asked what a clear PET Scan would mean, said that we’d celebrate. I think he was just trying to be positive, but he made me think for a moment that this nightmare was over.

Radiation will not be as bad as chemotherapy. But it will mean more juggling of my time. And it will mean more exhaustion. Being tired brings on a state-of-mind of depression that is sometimes hard to shake. I manage to do it many days, but today I’m just tired of it all. I wish I could just fast-forward time until this summer when this is all behind me.

This evening has at least redeemed the day a bit. I came home to warm chicken and dumplings waiting on the stove. My Mom knew I was having a rough day and left me a wonderful dinner to enjoy. The dog seems to be feeling better, and I’ve tried to relax while watching Glee.

I’ve stopped and started this post a couple of times. Robbie encouraged me to finish. One of the reasons I blog is in the hope that other people going through cancer treatment will happen across it, and will find comfort in knowing they are not alone. So for this reason only, I finished this post.

I was hoping that I was going to start posting a little less frequently, but it appears I will have something to write about a bit longer.

Monday, April 18, 2011

Celebration Time, Come On!

I have had a hard time writing lately. I’ve sat down to write this post a few times and haven’t been able to find the right words. But the more I think about it, it’s not an issue of finding words, but more an issue with trying to figure out how I am really feeling.

Let’s start with what is easy to define. Physically I’m feeling good. I traveled to Nashville last week and had a good trip filled with great meetings and a visit to my first honky tonk! The only problem I had regarding treks through the airport and Nashville was that my brand new Mary Janes rubbed a bit and I got a blister! It was a much different experience from my last trip through an airport in November when I was first diagnosed. I remember not being able to breathe that trip and stopping half a dozen times to catch my breath from the parking lot to the gate.

After traveling for most of last week and a busy day of shopping on Saturday, I do have to admit that by Sunday I was feeling a bit of fatigue. I slept until almost 10 AM, which is rare for me. I’m feeling good today though, so the extra sleep and downtime definitely helped.

Tomorrow is my radiation consultation. I am not going to be angry if I have to do radiation. I know that the cancer is currently gone, and I know how happy that makes me. If radiation helps to ensure that it stays gone, then I can accept that course of action. I am a little annoyed, but my annoyance comes mainly from the fact that I thought I wouldn’t have to do radiation.

I had asked the oncologist a few weeks ago what we would do if the PET scan was clear and his exact response was “We’ll celebrate.” I hate to nitpick, but radiation does not exactly sound like a celebration. Unless they give out champagne and strawberries and play Kool and the Gang while you’re being treated…

Radiation, from my understanding, is not as bad as going through chemotherapy. One of the worse parts about it is that it is every single day for a defined period of time (usually three weeks). I have gotten tired of scheduling my life around my treatment and hate the thought of three weeks of radiation appointments. Robbie reminds me that three weeks is hardly a blink when we’re looking at a potential lifetime cure. I totally get that. I don’t mean to sound ungrateful. So many types of cancers can’t be cured, and so many other people would love to go to radiation “just in case”. I am very lucky.

So I will take a deep breath and feel gratitude for modern medicine and all that it has done. And I will not ask where the Dom Perignon is if he suggests that I do a three week course.

Monday, April 11, 2011

But Wait, There's More...

I must take a moment and rave about the iPad. I am at the airport typing this entry. Never has the Internet been so quick and easy to access.

Let's start with the good news. I don't have to get blood drawn or see the oncologist until July! It had become the place where everyone knows my name and I found that to be a bit disconcerting. Just prior to that visit, they will also schedule another PET Scan.

They couldn't possible just let me have one day with all good news though. Even though the PET showed no traces of Lymphoma, he would still like me to talk to the radiation folks. He said that with my type of Lymphoma and the fact that it had started to spread into my chest that they may still recommend radiation in order to ensure that recurrence is prevented.

My heart sank when he told me this. I was almost certain I was done. It is still possible that the radiologist will give me an all clear, but there is also a chance that he won't. I am prepared to do whatever I need to do, but that would totally suck. My appointment is next week, so at least I have a little reprieve from all things cancer.

I do understand that this year is a critical one. The most probable time for recurrence is this year. And if it comes back it becomes harder to treat. And multiple course of chemotherapy are rough on your body.

For now, I am going to enjoy the week. I am looking forward to a few days in Nashville. It will be a good distraction.

- Posted using BlogPress from my iPad

Sunday, April 10, 2011

How Are You Feeling?

I am getting this question a lot lately. Now that everyone knows that I’m cancer free I feel like there is an expectation that I’m back to normal. Even in my own mind I am convincing myself that all is well now.

Unfortunately though, I am just over two weeks out from my last chemotherapy session. My finger tips are still numb. My hair just stopped falling out. My digestion process is still out of whack. My mouth feel and taste are just getting back to normal. I still covet sleep. My muscles ache terribly after any sort of exertion. I know that they staggered each chemotherapy session to be 21 days apart so that you could recover prior to the next session. Next Thursday will be my 21-day mark so I’m hoping it is downhill after that point.

That being said, just knowing that the cancer is gone has made me feel so much better and has made the side-effects pretty manageable. I’ve really been trying to get back into a normal rhythm again. I worked a pretty full week last week. This past weekend was a full one as well. We went to Charlotte to shop at IKEA and Trader Joes on Saturday. I do have to admit, IKEA was exhausting. We had to take a break between furniture and housewares.

This upcoming week brings work travel! This is my first travel since the cancer diagnosis. I am meeting with the oncologist tomorrow for my post-chemotherapy follow-up, and then I am flying to Nashville for a few days. I have to admit I’m a little nervous about the work travel. I hate having to wear a wig, and I hate it when I can see people trying to gauge how to react to it. I also hope that I am fully-firing mentally. Sometimes when I’m really tired, I can’t find words or form my thoughts as quickly. I plan on going to bed really early Monday after my flight to Nashville in order to get a full night’s rest before my meetings start on Tuesday.

I will miss home the next few days. Robbie has really been my rock during this cancer thing, and I’ve really come to depend on him – particularly at the end of the day when I need to just talk through how I’m feeling about everything. I’ve told many people that the physical part of cancer was a little easier than I expected, and the mental part was a bit harder than I expected. But it certainly made me stronger.

Anyways, I have some laundry and packing to do and some resting to do. Hope you all have a great week. Wish me luck at my oncology appointment!

Sunday, April 3, 2011

Welcome Home, Mom!

This week marks the end of two very important projects that have taken me the better part of the last six months to accomplish: Kicking cancer and moving my Mom to North Carolina. Not too shabby if I say so myself!

Never have I felt so exhausted, but in a wonderful way. This weekend was a whirlwind. Friday night after work we drove up to West Virginia for my Mom’s big move. West Virginia must not have been happy to be losing a resident because it sure gave us some nasty weather while we were loading the moving truck on Saturday morning. Cold rain and sleet made for a lot of mud and nastiness. I did take it easy during the move given that I had just had my last chemo about nine days ago, and I knew I still had to drive six hours after we got the truck packed.

We had the moving truck loaded by noon and our three car caravan headed to NC. My Mom drove her car, Robbie the moving truck, and I drove our SUV loaded with four cats. I admit I was a bit concerned about how her cats were going to handle the move. But they were troopers and stayed pretty quiet for the six-hour ride.

This morning I woke up very achy – I think mainly from the two days spent in the car. Something about chemo makes your body ache in general. Throw in something that would regularly make you ache a little, and it becomes magnified. Today we unloaded the truck with the help of two friends. (BIG THANKS to Alan and Scott). There is still much for my Mom to do, but for her I think it’s the fun part. It will be fun to see her house become her home over the next few months.

We are now home doing the Sunday night routine – laundry, trash, etc. It is good to be home relaxing a little with the beagles. I have found that I am sometimes child-like when I am fatigued in that I act out and become a bit of a brat. I am willful and I don’t like to admit that I’m tired. In fact sometimes I don’t even recognize that my fatigue is what is making me a bit of a pill to be around. Robbie luckily has learned to recognize this over the last few months, and is patient with me.

The next few weeks bring a long-awaited return to normalcy. It will be weird not having these “projects” hanging over my head. My cancer surviving friends have warned me that the post-chemo fatigue doesn’t go away immediately and that I should be patient. The side-effects of this final chemo have been easier to handle and I think it has everything to do with the recent good news and the many distractions.

I feel so behind in many areas of my life – tons to do at work, the house is a disaster, yard work needs done, my basement looks like a bomb exploded… I could go on and on. But when I feel overwhelmed by it all, I can look down at the scar tissue in my hand or glance in the mirror at my ostrich hair and remember that a messy life is a GREAT life.