28 Days Later

It is apropos that the title of this post corresponds with a zombie movie.  Because a zombie is just what I feel like after 28 days of radiation.  But it is over and I can finally start to recover from this whole affair.   

This morning I took pastries to the radiation team that worked with me each day.  They are an amazing bunch of women that made me laugh and feel comfortable in a situation that is really one of those life events you hope to never experience.  We would laugh and talk each morning as I undressed halfway and positioned on a steel table while they adjusted my body to ensure that I was in alignment.  They were kind and caring and made a bad situation as good as it could be.   They hugged me and celebrated with me this morning.  We ceremoniously removed the stickers from my body this morning that cover and protect the marks that were drawn on in order to line up the radiation machine.    

I sit here sipping cranberry juice as a type this, because it takes a lot of cranberry juice and water to keep my very cranky radiated bladder working properly.  And my coffee cup is mostly full, because I can’t really drink the caffeine right now.   I get a cup and enjoy the smell, warmth, and taste – careful not to drink too much of it though or my bladder and digestive system will both be unhappy.

And oh the joy of trying to eat food that doesn’t make my stomach angry.  There really isn’t anything at this point that doesn’t cause a problem.  The list of foods to avoid during pelvic/adominal radiation include raw fruits and vegetables, high fiber foods including whole grains, anything greasy, acidic foods, dairy including cheese, rich pastries/ desserts, meats with high fat content, caffeine, alcohol… So basically I’m left with bananas, white pasta, potatoes that aren’t fried, lean proteins, mushy vegetables, and processed cheese.  And now, after 28 days, even those foods are questionable.  But at least I can eat.  I just need to medicate and only eat when I know I can be near a bathroom.  I was chatting with a few radiation comrades this morning that are limited to only Boost and Ensure due to their radiation treatments so I am reminded to be grateful that I can eat at all.

I had been missing Gary, my 8 AM radiation partner.  He had not around all week and I was worried that I wouldn’t get to say goodbye, but he was in the waiting room this morning.   Apparently Gary had been in the hospital for the last five days with double pneumonia and some other issues.  My heart goes out to Gary who still has quite a ways to go before he is done with his treatment.

Today I am elated to close this chapter.  I hope that there was nothing for the radiation to kill except healthy cells and it was all a waste.  I’ll never know if that is the case.   But if there were a few cancer cells floating around, I hope the radiation did its job.  Or all the processed macaroni and cheese I’ve eaten over the last few weeks will be for nothing.

The Oncologist said I should be right-as-rain within two weeks.  Can’t wait to enjoy a salad, some spicy Mexican food, and a cocktail!      

Gary

Today was my 23^rd session of radiation. Only five more to go. I was feeling pretty foul this morning as I was headed to the hospital for my session. I woke up feeling tired.  The fatigue from radiation is accumulative and I am definitely feeling the effects as I near the end.  This week has been very busy at work and coming in late everyday makes me feel rushed once I get to work and I spend the entire day feeling behind.

I have the first appointment of the day for my radiation therapy.  They have two machines, so there are two of us that arrive just before 8 AM – me and Gary.  Gary is older than I am – maybe in his late fifties or early sixties.  But he is a spry looking gentleman.  Had I not met him in the radiation waiting room, I would have never suspected he is a cancer patient.  He likes to watch the news in the morning and often chats with patients as they arrive.  He has always been cheerful and I have often wondered about why Gary was receiving radiation.

Today Gary and I finished up at the same time so we rode the elevator down together and had to wait for our vehicles.  Gary was not his usual cheerful self this morning and started telling me about his treatment.  He is not only receiving daily radiation, but is also undergoing chemotherapy right now.  Gary can’t eat at all because his throat is too raw.  I shared with him that I had previously gone through radiation of the neck area and understood his plight.  He said he’s tired, he can’t sleep, he can’t eat, and he feels like he has no quality of life right now.  He said they gave him a 60-70% chance of getting through this and that it had better work because he wouldn’t do this again.  Gary asked me how long it took to get my taste back after treatment.  I shared with him that it was a good 2-3 months before food tasted right again.  He said that his cancer was Stage 4 which is why they are treating him so aggressively.

Our cars arrived around that time so we waved and headed our separate ways.  Gary also goes to work each day after his radiation.  Those of us who fight for the early appointments usually have someplace to be.

Talking to Gary definitely gave me an attitude adjustment.  I have been complaining about being tired, but at least I can sleep.  And I can’t eat the things I would like to eat, but I am able to eat without pain.  And most importantly I am fighting the potential of cancer and not actual cancer.  Gary is fighting the real fight.

I am grateful for Gary and am sending him my hopes for the strength that he needs to get through this experience.  I am also reminded that I need to practice kindness.  You can never tell by looking at someone what they are going through at any given moment.  Life is hard sometimes, and everyone has a rough patch now and then. 

My rough patch is almost over.  And for that I am very grateful.

Radioactive New Year's Eve

It is New Year’s Eve.  I was up at 6 AM for a 7 AM radiation appointment before going to work.  That is not what anyone envisions for the last day of the year.  I should be on vacation enjoying the holidays, but my vacation time was and is being used to cover all the time associated with ridding my body of uterine cancer cells.  So today, I go to work.

After work, I’ll go home to celebrate.  The problem is I can’t really drink alcohol because my stomach can’t handle it.  And I can’t stay up late because of the fatigue associated with radiation.  So odds are that I won’t even make it until midnight to welcome in the New Year.

I will admit that I’m feeling a little sorry for myself today.  Even though logically I know that I should not.  I should consider myself very lucky because so far I’ve dodged another bullet that could have been so much worse.  So I should be celebrating.  I know there are other people that are waking up today knowing this will be their last New Year’s Eve.  Or wondering how they are going to put food on the table for their family.  So I need to snap out of it.  But once and a while it’s just hard to do it.

This week has been long, and to think it’s only Wednesday.  The week started with my second session of internal radiation and an IV iron infusion.  I will say that the iron infusion is helping with my energy so I should be grateful to have had it.  It looked like an IV of rusty water.  I tried to pretend that it was wine.  But I hardly felt drunk afterwards.

I have counted the days out, and I think radiation will end on January 22^nd.  At that point I will have completed 25 external sessions and 3 internal sessions.  I will have been half naked in front of strangers 28 times.  I will have layed behind a heavy door over six inches think while radiation technicians watch and listen from the other side of the door.

One last thought.  To the woman who cut line in the drive-thru this morning.  I hope that getting your coffee one minute sooner than me was worth making my mood just a little less cheerful.  I saw you were at an awkward angle in the parking lot and I was actually going to let you go ahead of me had you looked up and made eye contact.  Instead you avoided eye contact and jammed your car in front of mine.  Happy Freaking New Year to you.   

On the Fifth Day of Radiation

Today was day five of radiation.  I am 17% done with my treatment.  So far, so good.  No real side effects yet except feeling like I need an early bedtime.  But that could be lingering effects of the surgery in combination with the radiation.  I’m starting to get into the routine of hitting the hospital each morning and getting radiated.  I wear Christmas earrings each day and they play Christmas music in the radiation room so I suppose it’s a downright festive environment.  The radiation technicians are a great bunch of women.  They are compassionate and joyful, particularly given what they deal with each day.  They make me laugh and help me overcome the anxiousness of being half naked while getting nuked in front of strangers everyday.

The hospital has valet parking for radiation patients.  This is very accommodating, except it posed a dilemma for me.  When you are told to use valet at a medical facility, do you tip the valet?  I researched online and found a variety of answers.  By the time I’m done with my treatment I will go there over 30 times in the course of just over a month.  That would be a lot of tipping.  I was feeling guilty every time I showed up and didn’t tip.  And it didn’t help that the weather has been cold or rainy almost every morning.  And the folks that work the valet are about as nice as they come.

I finally decided to tip – if nothing else to relieve the stress I was feeling about the situation.  There are two people that work pretty much everyday so yesterday I took a $10 for each of them.  I figured that would cover me for this month and I could gauge their reaction about tipping.  Both said I didn’t need to do it, but did not refuse the tip.  So from the reaction, it’s allowed but not expected.  That was good to know.  I figure in January I can do it again.

The other “side effect” I am experiencing is that I am feeling a little bit overwhelmed.  Between all the appointments, keeping up with work, and the to-do list associated with the holidays there doesn’t seem to be enough time in the day.  I am starting to become a little scrooge-esque in my attitude towards the holidays.  I am working through the to-do list and am hopeful that I will feel a little less negative by the weekend.

I'm so tired, but I can't sleep...

I have returned to work full time after my surgery.  It is great to be among the living again.  I craved the feeling of being normal so desperately.  And really for the most part I feel great.  The incisions are starting to fade to scars, and I can go for hours sometimes without thinking about this whole ordeal.  When I get home at night though, I am exhausted. The kind of tired where your whole body aches.  And I watch the clock and can't wait for 9 PM to roll around so I can head to bed without feeling like a toddler.  It has only been six weeks since my surgery so this is not unexpected.

But several times over the last week I get to bed and sleep doesn't come which defies all logic.  I watch Netflix or cruise the Internet in an effort to distract myself from trying to fall asleep.   Most nights I eventually do get to sleep.  Tonight is not one of those nights.  It could have something to do with today not being the best of days.

Today was my first day of radiation simulation.  It is the set-up process to prepare you for radiation. Because my radiation will be on my pelvic area, it requires some awkward nakedness.  I basically take my pants down to mid-thigh and lay on a table while various technicians position me, draw on me with markers, and put stickers on me.  Sounds like a frat party gone wrong.  To add to the good times, a probe was also inserted while I was being X-rayed to ensure alignment within my vagina. Once they felt I was perfectly aligned, a mold of my legs and their position was created so that each day when I lay on the table I will lay the exact same way.  I also had a CT scan to confirm alignment. I go back next week for one more dry run before we go live.  

A public service announcement for all you ladies out there - have your pap smears. You may hate it, but waiting too long to get a gynecological issue diagnosed can land you where I am now.  More people have seen my lady parts over the last two months than I care to count.  I would give anything to turn back time and be able to schedule a papsmear for about a year ago.  There may have been a chance for early diagnosis and treatment that would not have required radiation and would not require daily nakedness in front of strangers.

Part of me wants to just not do the radiation.  I don't currently have cancer.  I could refuse treatment. But as much as I want to walk away, I don't want to risk it coming back.  The future would hold much worse things for me than five weeks of awkward nakedness, side effects, and probing.  And I would be writing about how I should have just sucked it up.   

These recent blogs are difficult to write and share.  This is the type of thing you don't talk about with strangers and weirdos on the Internet.  But I know the power of the Internet.  Some woman out there may find this blog and find comfort knowing that she is not alone.  Or someone else may read it and get that pap smear they have been putting off.  Or maybe my jokes about awkward nakedness will make someone laugh on a bad day.  Any of these outcomes make my willingness to share worth the risk of embarrassment.

Cancer: The Sequel

This blog is a summary of events from the last few months.  I did not initially blog because I was struggling to deal with some difficult news and really didn’t want to share my thoughts immediately.  I actually missed blogging, and in hindsight probably should have done so.  I forgot how therapeutic it can be.

So, all is well on the lymphoma front.  I had my check-in with my oncologist over the summer and as part of my check-in he sent me for a CT scan which is routine post-cancer care.  When he reviewed the results of the scan he mentioned that my uterus and one of my ovaries looked enlarged and that I should probably check-in with my gynecologist.  But that I was all clear with regards to lymphoma!

I was already overdue to see the gynecologist anyways because the person I was seeing left the practice, and I was having horrific menstrual cycles so I actually followed his advice and got an appointment set up with a new gynecologist. 

The visit with the new gynecologist was like unleashing the Kraken.  We spent a month getting to the bottom of various issues.  First issue resolved:  hypothyroidism.  The radiation for the lymphoma probably damaged my thyroid.  That was the easy fix though – a pill.  I had the beloved Pap smear and that came back normal (at least something did!).  Next we did a pelvic ultrasound which showed a cyst on my ovary and a thick endometrial lining.  She gave me medication to hopefully help, but also wanted to do an endometrial biopsy.  Because I’ve always had wacky periods, I was not really thinking cancer.  I figured it was hormone irregularities which were potentially made worse by the chemotherapy I had for the lymphoma.

Imagine my surprise a week later when she called to tell me that the biopsy showed uterine/ endometrial cancer.  I was devastated.  It is very unfair to have fought and beat one type of cancer only to get a completely different type of cancer.  The last time I heard “you have cancer” I felt a lot of fear because I didn’t understand what it meant and how to deal with it.  This time I felt a lot more anger about the situation. 

She set me up the next day with an oncologist in Charlotte that specializes in gynecological cancers.  He was very reassuring and scheduled me for a hysterectomy.  He felt that surgically we could remove all of the cancer.  I was relieved to have such a positive prognosis.  Both times that I’ve had cancer, I was told “if you are going to get cancer, this is the one to get.”  Yeah, that always helps to hear.

I went into the hospital on October 22^nd for the hysterectomy.   They were going to attempt to do it laproscopically which is less invasive.  But the surgeon told me going in that it may not work out that way and they may do a full incision which ended up being the case.  The surgery lasted about 3-4 hours.  The first two days of recovery were pretty rough.  Every time I would move around I could barely breathe, my pulse would race, and my blood oxygen level would plummet.  They finally did a CT scan and identified that I had a pulmonary embolism (clot that had moved to my lungs).  They started me on medication to resolve the clot.

I was able to go home after four nights in the hospital.  After two weeks they removed 50+ staples from the incision sites.  Because they started laproscopically, I have a total of four different incisions in my stomach.  Three weeks after the surgery, I went to see the surgeon for post-operative follow up and to discuss pathology results.  The good news is that the doctor believes that all of the cancer was removed.  The margins in a few areas were not ideal though, and because of that he recommended that I follow-up with radiation therapy to ensure that there is not spread or recurrence.  He also wanted me to have a PET Scan to verify that no other cancer showed up in the scan.

And that brings me to this week.  On Monday, I went for my PET Scan and today I met with the radiation oncologist.  The best news yet – the PET Scan looked good.  No cancer is showing up – nothing in the lymphnodes.  But even with such good news, they are still recommending five weeks of radiation.   I will admit this news is a bit devastating.  Radiation is a huge commitment.  It is every single day, five days a week.  Something about getting cancer treatment everyday messes with your head.  You can’t get away from the thought of cancer.  And the fact that you are being treated with something so fierce that no one will be in the same room with you while you receive treatment is a little unsettling.

I am a “look on the brightside” kind of girl.  I am telling myself  all of the positive things and there are a lot of positives.  No chemotherapy.   We are not trying to get rid of significant cancer – we’re trying to prevent cancer and ensure I live a long and happy life.  Radiation is less than 30 minutes a day.   But even with all the positives, a good attitude isn’t coming easy for me today.

I have said this before, but can’t say it enough – cancer creeps into your life in ways that aren’t just physical.  It negatively impacts everything and everyone in your life.  Robbie has had to take on the bulk of things at home because of my recovery from surgery.  My workplace has had to cover my workload for a second time.  I felt guilty the first time, and this time I feel downright awful about it.  I know that none of this is my fault, but that doesn’t help. 

I am tired of being at home.  I am tired of feeling tired and of thinking about all of this.  I am tired of hearing everyone say “You’ll get through this!  You can do this!”  I am just so tired of it all.  And I know this is not a fighting “kick cancer’s ass” attitude; but it just happens to be how I’m feeling on this particular day.  I will beat this and I will be awesome, but I will be awesome tomorrow.

 Stay tuned as I bring you five weeks of disturbing stories from the radiation room…

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.

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.