The Beginning

Figured this was as good a time as any to go back and fill everyone in on how this all started....well, who the hell knows how it all started, but how it started to effect me.

Lot's of people have actually asked me these details because they had symptoms they were worried about and wanted ....advice? ....peace of mind? not sure, but they asked and I told them and now I will tell you.  I hope it does serve as some form of education to people and while I certainly hope no one I know ever has to go through this, you just may and I hope my experience will help someone go get checked out and treated sooner than I did.

***So this is a post about my symptoms of colon cancer.  There is absolutely no dignity in colon cancer.  Your colon is basically a transporter of poop so, this is not going to make me appear very sexy or cool to anyone but I feel like it's important and I lost my pride and humility a long time ago so, you've been warned.***

Basically I have never considered myself to be "regular".  We've long joked in our house about how Wes has to spend thirty minutes in the bathroom every morning at the exact same time (you didn't think I was going to embarrass myself about talking about my symptoms without getting a shot in at Wes, did you?) and I could put that function off until it was completely convenient for me.  This got worse for me during my pregnancy with Garrison but I figured it was a part of pregnancy and I felt like after delivery I went back to my "normal".  On occasion I assumed I had hemorrhoids due to some bleeding but that came and went and I thought it was fairly normal too. Otherwise, the first real symptom that I can think of occurred right after my dad died in March of 2011.  While planning his funeral, I got severe abdominal pain.  I assumed it was from stress and eating crappy hospital food for the past several weeks but after a week of feeling terrible I went to my doctor and found out I had a UTI.  This may not sound weird but I hadn't had a UTI since I was 19 and hadn't done anything that would normally result in a UTI so I was bit baffled (but thought I was being paranoid because my Dad had just died of cancer).  I took the full course of antibiotics and enjoyed a few days of feeling better and then the pain started again.  I had another UTI.  This was not normal UTI pain either, as with the first time, it was severe abdominal pain but no pain when urinating or an urgent need to pee.  My pee was the color of rust.   My doctor sent me for a kidney ultrasound to see if I had a blockage or kidney stones.  I didn't and luckily it seemed like the next round of antibiotics worked.  The infection went away for good that time.  

That summer I got pregnant with Brooks and I felt fine the first trimester.  Brooks was originally a twin pregnancy but unfortunately, we lost one of the babies around 9 weeks.  As with Garrison, I had no morning sickness.  However, right as I entered the 2nd trimester, I started having pains that I thought might be round ligament pain, but as they progressed over a few days I suspected a UTI.  They were very similar to what I had experienced in the spring.  I called my OB and was tested for UTI but the test was negative. My urine again was the color of rust, even though I was drinking 100 ounces of water a day.  I went back to my OB three times continually complaining of pain and fevers, they kept telling me to up my water intake and that I might be having symptoms because of my body absorbing the lost twin, constipation and that second pregnancies were harder than firsts.  So, I dealt with the pain and fevers for two and a half weeks.  Finally, I couldn't take it anymore and went to labor and delivery and was actually admitted.  That night the pain was manageable and I actually worried that they were going to think I was being a baby.  Around 4 am I started getting chills and asked for more blankets and another tylenol.  It was too early to get more meds but the nurse brought me a blanket.  I was shaking uncontrollably so she left to get me more blankets.  By the time she came back I couldn't even catch my breath.  She called for help, I got oxygen and was throwing up.  They took my temperature and it was 104.1!  There were about 5 nurses and doctors attending to me and they seriously seemed freaked out.  I got  a shot of dilaudid (heaven!) and started to feel better.  The fever broke and I was doing better by the time they ordered a bunch of tests including an MRI. The assumption was that it was my appendix, even though I didn't think that was it since the issues seemed more chronic than acute to me, but whatever.  The only thing they found was a swollen fallopian tube.  I had a consult and they decided not to operate because it would be too risky to Brooks.  I was feeling better so I was ok with that.  So, I stayed two nights, went home and felt better most of the rest of the pregnancy.  By better, I don't mean good, but better.  I was exhausted but figured it was due to being anemic, which I was and to being really big....which I was.  By 36 weeks I was having about 10 contractions an hour most of the time and had to have weekly NSTs....but I made it to 39 weeks and 3 days and Brooks was born healthy and I looked forward to feeling better post pregnancy.

My delivery was so much easier with Brooks than with Garrison so I was really optimistic about my recovery the first few days.  I felt decent until we went home.  The day I went home I started feeling bad and by that night I had what I thought was  a stomach bug.  Basically I had terrible diarrhea. After 3 days we called my Dr and were told (by the on call doctor) it might be a uterine infection or it might just be a bug and was prescribed antibiotics.  Things got worst but my OB told me it didn't sound like a uterine infection after all and to stop the antibiotics and just take immodium.  That stopped the diarrhea but not the terrible cramping that had accompanied it.  I put up with it for almost 4 weeks, which looking back infuriates me.  It felt a lot like what I had experienced in October so I asked my OB to refer me for an ultrasound so we could look at the fallopian tube again and possibly have it removed.  The u/s (which was vaginal, btw...have  mentioned that I had birthed a 9 pound baby from that very vagina 4 weeks earlier, so yeah that hurt like a mofo) showed what looked like retained placenta in my uterus but didn't even see my fallopian tube.  They said I needed to wait a few weeks and get a repeat scan to be see if the placenta issue resolved itself.  I felt so hopeless since they told me that the placenta would not cause the kind of pain I was experiencing and that maybe I should see a GI.  So I went to my pcp the next day to get a referral.  While there, I asked for a UTI test and low and behold it was positive.  I thought I had my answer.  Of course, I almost got mastitis from pumping and dumping for 24 hours when I started the antibiotic but that's not the focus of this post.  I felt better.  I looked forward to actually caring for my children and maybe even getting to enjoy my maternity leave.  Unfortunately within a few days I felt bad again.  I went back to my pcp and sure enough I had another UTI.  I knew this was bad.  No UTIs in 19 years and then 4 within one year made no sense whatsoever to me.  So, luckily my pcp ordered a CT scan.  I was so happy to finally be taken seriously.

So, I drank my Berry Flavored Berium, which sucked by the way,  and had the CT scan on the Tuesday before Memorial Day weekend.  My Dr called me only a few hours after the scan even though I was told to not expect a call for a few days. She told me that apparently the CT had shown retained placenta in my uterus (duh), and something in my colon that was either an abcess or gas. While I was happy it showed something, the idea that all of this pain was caused by me needing to fart was frustrating and beyond embarrassing.  She told me I needed to repeat the scan that Thursday.  Great.  So, I went and got another two bottles of berry flavored berium and drank them. They did not taste any better than the first time around.  I honestly thought about cancelling the appointment.  I felt a bit better most of the day and figured if it was just gas, I could work on dealing with that....somehow.  But I went anyway and actually by the time I got to the office the pain had come back as it did every day and  was needing to breath through it like contractions by the time I went back for the scan. Basically the results were the same.  My Dr said they wanted to do a 3rd scan but this time to do a rectal scan, which sounded fantastic! (for those of you reading this that don't know me that well, that is sarcasm) She told me we would schedule it after the weekend if I didn't feel better by then and suggested I try an enema to avoid the scan....so that Monday I finally worked up the nerve to do just that.  And.....it didn't work.  That's when I knew I was in trouble. 

The pain continued that day and I finally decided I had had enough and drove myself to the ER (after checking the wait times on the website).  They got me in quickly and got me some morphine (thankyouverymuch) and then did another ultrasound (vaginal....cue tears) and again talked about retained placenta, this time adding that there appeared to be an abcess near my ovary that could very well be causing my pain. I was admitted to the women and children unit (the cadillac of units at Fairfax Hospital) and scheduled for a D&C for the next day.  My OB/GYN performed the D&C and informed me afterwards that there was not actually placenta in the uterus but some other tissue and that behind my uterus she found lots of blood that was concerning to her so she was consulting with a GI doctor....well, now that I think about it, she probably brought in the colorectal surgeon at that point if I remember correctly.  It's weird how I thought I would never forget those days.  I believe they quickly talked about the need for me to have a colonoscopy but were concerned I couldn't do it in the physical condition I was in at the time.  They finally decided I would get a partial colonoscopy and therefore I had to be moved to the general surgical unit (the Yugo of units at Fairfax Hospital-- it is the unit that will be replaced when all of the renovations are done).  I was moved Friday night and at 8:30 Saturday morning my OB called.  When I answered the phone she said "oh, Susan.  I thought I was calling Wes"  That's when I knew I was fucked.

She asked me to call Wes and have him meet us at the hospital.  I knew what she was going to say before she got there.  The tissue in my uterus was cancerous.  She did not believe I had uterine cancer, she believed the cells came from the colon.  At this point my entire world view, comprehension of information, ability to think rationally went down the drain.  At the time I thought the nurses on the unit must have hated me but I've since spent so much tme on that unit that I know I wasn't even close to being a really challenging patient.  But I was not happy to be there and God help the nurse who had me the shift that I found out I was getting a roomate the same time I was expected to drink two gallons of "go lightly" which tastes like shit and makes you go anything but lightly, by the way.  I had just found out I had cancer and now I needed to shit my brains out for 8-10 hours and I felt that having some privacy for this event was not too much to ask.  I got the colonoscopy and a private room a week after being initially admitted to the hospital.  The colonoscopy confirmed a tumor totally obstructing my colon and bulging outwards to my other organs.  I got hooked up to TPN (which is basically an intravenous way of providing protein since I was not really eating at that point) which I would need to continue to have at home and was discharged that Wednesday for a few days while I awaited my surgery date to remove the tumor.

I went back to the hospital the following Monday (June 11) for my colon resection surgery.  I knew I was also having at least a partial hysterectomy as well.  The cancer had spread to my uterus and possibly both ovaries.  Going in to surgery I had been given the option of having both ovaries removed regardless of  the presence of cancerous cells (to decrease the chances of the cancer coming back or spreading there in the future).  I had decided to take my chances and asked that they save one ovary if at all possible.  Surgery was much more complicated than they had anticipated and I woke up in amazing pain and learned they had not been able to save either ovary.

Recovery was horrendous.  The first day after surgery I was expected to get out of bed and walk three times.  There was no way.  I got out of bed and stood there for about 1 minute and that was hell.   At this point most of our friends and family had learned of my diagnosis and were sending me messages telling me how I would beat this because I was so strong.  I hated those messages.  I felt like the weakest piece of poop (emotionally and physically) on the planet and was aggravated that either 1) people believed I was strong and were about to find out what a fraud I was or 2) were blowing smoke up my ass (no pun intended) because you just don't know what to say to a 39 year old with colon cancer.  Now, I am of course thankful for those messages (and the continued encouragement) but they were really hard to hear, well, read at the time.

I was morbidly depressed and physically annihilated.  Friends came and made me walk.  I hated them at the time but they may have helped save my life.  Nobody could get me to eat (this was completely new territory for me).  Visitors got a real kick out of the sign above my bed reminding people "do not insert anything rectally".....people would seriously laugh out loud when they saw it.  I found nothing remotely funny about directions regarding my rectum at the time.  Everything about that stay was humiliating and demoralizing.  I was miserable.  Finally they gave me some antidepressants after tip toeing around the subject and me finally saying "hell yes, I'm depressed, please give me something".  I was discharged a week after I was admitted, but if it was up to me, I would have stayed much longer.  I dreaded facing the real world and was heartbroken to come to terms with what I was doing to my family.

Obviously this post has turned into something much bigger than I anticipated and I'm not sure if what I'm describing now can still be called the beginning.  It was the beginning of my recovery, which was slow and terrible and included two return trips to the emergency room-- one accompanied by sirens in an ambulance. It was terrible to let my daughter see me so ill and I seriously can't believe how terrible I felt for weeks.  It wasn't until the last few days of June, after I found out that the diagnosis was Stage IIB (I dreaded it was going to be stage 3 or possibly even 4) that I started to turn the corner and could eat.  Once I started eating things got better fast....and now I wish my appetite was not so great as I have put back on almost 15 of the 70 pounds I initially lost.  But that is incidental.  Today, I am optimistic.  Maybe even niaive-- the possibility that a PET scan in January will show cancer still exists in my body is not even a remote possibility to me.  Sometimes I fear I am setting my expectations too high....but I can't go through the hell of chemo without believing it will be totally worth it.

Whew, sorry, this turned out a lot longer than I expected.  It was a bit painful to write, hope it wasn't too painful to read.  I know that when I got my diagnosis I scoured the internet for anyone like me with a similar  diagnosis and experience so I feel an obligation to provide my experience should anyone else need the same.  While I hope no one I know ever has this experience, unfortunately, it seems the odds may be against that so hopefully my story can at least help someone get diagnosed earlier and better know what to expect.