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…