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.   

Oranges Are the Devil

Last week I went to see my oncologist (my Lymphoma oncologist who I see for routine follow-up and to monitor my post-op blood thinner).  When he came in to talk to me he said he wasn’t sure why I was there for a visit.  I told him that frankly I wasn’t sure why I needed to see him either.  They always schedule the next appointment at the end of the previous appointment, and apparently he couldn’t remember why he had them schedule it so soon.

But actually he found something to discuss.  They always do a quick blood check while I’m there; just a finger prick’s worth of blood.  They ran my hemoglobin and the test showed that I was anemic.  He went ahead and had them take additional blood so he could further analyze my blood. There are many reasons that I could be anemic including recovery from surgery, radiation, and medications. He told me to go ahead and start taking iron pills.    
Today the oncology center called back about the bloodwork results.  Apparently he wants me to have two sessions of iron infusion (via IV) to help with the anemia and one additional test.  It seems like this whole ordeal is the gift that keeps on giving.  I go next week for my first iron infusion.  This time of year I want to think about infusions of cinnamon, ginger, and brandy.  Not iron.  The anemia can cause fatigue as well as sensitivity to cold.  I have been experiencing both.  I assumed the fatigue was radiation related. 

Speaking of radiation, today was day eight (out of 28) of radiation and my first session of internal radiation.  The internal radiation takes a little longer and is a bit more awkward and uncomfortable.  I will have internal radiation for the next two Mondays. The side effects of radiation had already started a bit late last week and the dose of internal radiation seemed to have kicked them into high gear this morning.  I have an irritated stomach pretty much every day and I feel like I have to pee RIGHT NOW even when I don’t.  Luckily I can take medications to help, and I can also alter my diet.

Bizarrely, the “radiation diet” suggests that I don’t eat fresh fruits and vegetables or whole grains.  I’ve been kidding around with Robbie that I’m now on the white food diet!  Mashed potatoes, pasta, dumplings, white bread, and chicken breast.  The unfortunate part is that it looks like coffee is no longer tolerable.  And heaven forbid I eat an orange.  I ate an orange a couple of days ago and I was miserable for hours. 

Today has been tough.  The news about the IV iron along with a round of side effects that came on fast this morning has left me a little weary.  I want to be drinking candy cane martinis and enjoying myself without worrying about the consequences.  This shall pass, but I am having a hard time being cheerful today.  Robbie brought me home beautiful flowers at lunch as well as much needed medication.  As always, he is a rock star when it comes to taking care of me.  As a veteran of “the fight”, I know that these days happen and that tomorrow will be a new day.  I just need to be kind to myself and wait this one out. If you are of good health, please go out and have a martini for me – I am with you in spirit.

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…

Bananarama

Once you’ve been treated for Non-Hodgkins Lymphoma you are subsequently monitored for recurrence over the next five years.  The monitoring includes check-ins with the oncologist, as well as bloodwork and scans.  It’s been well over a year since my last scan of any kind – in fact I think the last one may have been late summer of 2012.

So a few weeks ago, I received in the mail appointments for bloodwork, a CT Scan, and a visit with the oncologist.  I went and had the bloodwork done on Monday and this morning I went for the Scan.  My previous scans have all been combo PET/CT scans.  They use a nuclear contrast and it’s a bit of a different process from just a CT (often referred to as “Cat” Scan).  Today I had to go for a C/P/A CT Scan.  When I got the appointment, I didn’t understand all the acronyms, but I have since learned that I was going for a pretty comprehensive CT Scan that included my chest/neck, pelvis, and abdomen. 

My appointment was for 8 AM and I thought I’d be out of there by 9 AM at the latest.  I was so very wrong.  First, I had to argue over insurance.  I have a pretty common brand of insurance, but my policy is out of California, not North Carolina (NC).  Because I live in NC though, it seems all the systems are set up for the local insurance so there is frequently back-and-forth about what is and isn’t covered.  The woman I had to meet with to check-in for my diagnostic was quite insistent that my procedures were only 80% covered and that the costs were also subject to the deductible.  I had actually called my insurance company yesterday to verify and I am certain it is covered 100% and that the deductible is waived.  But after much back-and-forth and no wavering on her part, I reluctantly paid the estimate so I could go ahead and get the scans.  I was already dreading the appointment and knew that if I put my foot down and rescheduled, I would drag my feet and not do what I know is important.

She then informed me that someone would be bringing me a smoothie that I needed to drink.  The smoothie helps make my insides show up better on the scan.  A barium banana smoothie.  Yum.  I headed back to the waiting room, and as promised out came a technician with a cold smoothie and a cup.  She poured half in the cup and told me to drink it.  And told me to drink the other half twenty minutes later.  I took one sip and began to gag.  I was already cranky and frustrated which put me in no mood to conquer the barium banana smoothie.  I closed my eyes and took a couple of deep breaths.  I whispered to myself “I can do this.”  Nothing like trying to find your Zen in a waiting room at a medical facility.  I began to drink one swallow at a time.  I could not chug, but if I did one swallow at a time I could suppress the gag reflex.  I finally got through the first cup and by the second round was able to do it without gagging at all. 

By this time I had been there almost two hours, hadn’t had a bit of coffee, and needed to pee desperately.  Except I didn’t know if I was allowed to pee – being full of barium banana smoothie and all.  Finally someone retrieved me from the lobby and as we were walking back asked if I needed to use the restroom.  I was SO HAPPY to pee.  It’s the little things.

I wore my scan outfit (gym pants and T-shirt) so I didn’t have to put on a gown.  If you ever have a medical crisis, buy a good scan outfit!  Once in the scan room, I found out that not only did I have to drink the horrid banana barium smoothie, but that they would also be injecting some contrast for the non-abdominal parts.  Because it was actually multiple scans, I had two contrast injections and multiple passes of the scanner.  Finally, around 11 AM (THREE HOURS!) I was released to go home. 

I would like to say that after all I’ve been through that this process would not instill fear.  I have fought cancer and won.  I’ve had some minor scares (i.e., the tonsils!), but for the most part it’s been smooth sailing.  But the check-ins always makes me feel unsettled.  There are days, maybe even weeks when I don’t even think about cancer anymore.  And even then, it’s just a quick thought – not an all-consuming obsession. 

But today it was like running into someone you’ve been avoiding.  You try not to make eye contact and you try to pretend it’s no big deal and may even mutter something polite, but your heart is racing and you want to run away as fast as you can except you can’t because that isn’t the grown up thing to do.

For now I’ll try very hard to not think about it.  I’ll enjoy the weekend and spend time with the hubbie and the beagles.  And I’ll picture my oncologist saying those words I love to hear “Scans look fine.”  And I will avoid all things banana.