Friday, February 17, 2012

Losing Sleep

My mom often tells me I'm a worrier and to be honest she is probably right.  Lately my worrying has caused me to lose sleep.  I keep thinking about the surgery and what may come.  I know the surgery is weeks away and I shouldn't be so obsessed with it or the aftermath, but telling yourself not to worry and actually not worrying are two different things entirely.  Now that radiation is behind me all I can do is think about the surgery.

On Monday I met with my surgeon.  My discussion with her took several days to set in.  I told Dennis about it that night and even he had to stop me and tell me he needed some time to digest the information.  He is very supportive, but I know it is hard for him to hear what they are going to be doing to me.  

Here is what the doc said.  In mid March I will come back and see her so she can get an idea of how the radiation affected the tumor.  Based on the tumors previous location she wouldn't be able to the sphincter muscles thus a permanent colostomy would be required, otherwise I wouldn't have any control over my bowels.   If the tumor shrank and moved upward there is a chance they would be able to resect the tumor (pretty much remove my whole rectum) and attach my colon to my anus.  I know fun terms!  However this possibility comes with a few risks.  To start off when they do a resection, any resection, they need positive margins.  I believe my doc told me 2 cm.  My doctor says they can cheat the margins sometimes (say the go for 1cm instead of 2cm) but that will increase my chances of a local recurrence.  Yeah, that is the last thing that I want, to have to deal with this a second time around!  To ensure positive margins are met, they take a slice and have a pathologist call it on the spot.  If it is positive, they keep cutting until they get a clean slice.  Once the slice shows no evidence of disease (NED) they finish up the procedure.  After the surgery the slice is sent for further testing and should come back in a few days with a final call.  Now if the final testing comes back NED than I'm good and can proceed on.  If the final results come back  positive for cancer than they will have to perform another surgery and I will than end up with a permanent colostomy anyways.  The second surgery would need to be done within days of the first so scar tissue doesn't have a chance to set in.  If they are unable to do the surgery within 7-10 days of the first than they will have to wait another 4-6 weeks to go back in, thus pushing back the rest of my treatment.

Ok with all that information you may be thinking to yourself, think positive Melissa it will all work out!  Here is my experience though.  When my husband had his melanoma resected from his arm it took not 1 surgery to remove everything but 3.  He would get home from the hospital (his was an outpatient procedure) and within 3-4 days we would get a call from his surgeon saying that they had not met the positive margins and they had to go back in twice.

My surgery will be inpatient since it involves some major organs.  I will be in the hospital for about 7-10 days, obviously if I have a second surgery or any complications that time will be lengthened.  I wish I could just check out for the next couple months.  I've had my fair share of surgeries in my life, but this one is by far the most worrisome to me.  I don't feel like I'm in control of this on any level.  It has to happen, that I know!   Somehow I need to come to terms with what is about to happen.

Saturday, February 11, 2012

Weekends

So the weekend is here and I should be excited.  The hubby and the kids are home and I am surrounded by love and smiles.  Only thing is that I always feel awful on the weekends.  I don't know what it is; my guess is it is all the meds catching up with me.  These 2 days are the only days in the week that my body gets to take a break and start to repair the damage of the radiation.  I feel bad for Dennis and the kids, I do my best to keep a good face but I'm tired, itchy and just down right irritable.  They are sweet though and do give me some space to sleep and take care of myself.

Today was a little different.  For starters I woke up at 3:30 AM, I was WIDE AWAKE!  Errr, I hate not being able to sleep!  Shortly after I got up, the boy awoke demanding food. He must be growing again, because he wants to eat all the time and typically when it is inconvenient for the rest of us....like 4 AM.  He had a roll or two and was the happiest little man awake.  He giggled and played in his high chair and just munched away.  It is hard to stay mad at Tball, he's got a smile could light up the world!  After he was done filling his belly and keeping me company, he was ready to sleep again.  Since I couldn't sleep I blogged....because thats a good use of time between 4-6AM!

Now my plan was to spend my morning with Budgie.  She's been having a rough week and I wanted to know that Mommy was here, sick but still her biggest fan.  She woke up early, which didn't matter because I still couldn't sleep.  We headed to her favorite spot, the Silver Diner at about 7:15 this morning.  Took her to her gym class and then off to the kid's store (that's what she calls it) for Saturday crafts.  I made it thru the Diner with no issues, but the other two activities I have to admit I was struggling.  By the time we made it home I crashed.

Friday, February 10, 2012

The End of the Beginning

Today was my final day of radiation.  I was ecstatic and nervous.  The first trek of the long journey ahead is now over, but what next.  For starters I know that I can take my dignity back at least for a little while.  No more being filleted like a fish daily with my butt to the wind.  No more having to drink a bunch of water and than praying later that I don't wet myself during treatment.  No more trying to jump down from the table without showing my goods or totally eating it on the landing.

The effects of the radiation have left me blistered and burned.  I itch terribly in places that really should not be scratched or for that matter mentioned.  Sometimes bowel movements make me want to curl up in a ball and cry for my mommy (My cat, Dash, appears instead to beg for his dinner).  I'm often tired, irritable and sometimes drugged up.  So was it worth it?  Yes!  If it means I am here on this earth for even a few more moments, than Hell YES!  It will take some time for the radiation effects to go away and some side effects will be life changing.  The true test will come in a few weeks when they do another ultrasound; with any luck the tumor will be gone in its entirety.  That won't get me out of surgery or chemo, but it would surely lessen the extent of my surgery.

After my last treatment was done, everyone who was involved in my care gathered around to congratulate me.  Even got myself a nifty certificate, but I doubt I will be hanging that on my wall for display....maybe the fridge for a week or two.  And than I got the bell to ring.  I had imagined that the bell would be like that on the ship's bridge or maybe like the SEALS have for the guys who can't make it, but instead it was a small hand bell.  Either way I could not have been happier ringing the crap out of that thing and marking the end of my beginning.  

Saturday, February 4, 2012

Women's Issues ---It really is TMI

I am going to warn you all by saying this post may be a little too much information for most of you.  Feel free to skip this post if you wish.  If you do decided to continue reading, don't say I didn't warn you.

So as I go through this whole treatment process I have come up along some information that was interesting to me as a woman.  Pelvic radiation has a good chance of helping get rid of my cancer, but it has some huge side effects.  For starters, there is a very good chance that I will be sterile after all of this is said and done.  The ovaries are very susceptible to radiation.  Now after I had Tball I had my tubes tied, so to be honest that wasn't really an issue for me.  The doctors didn't really go into the whole discussion of sterility because I had already had a tubal ligation.  What they didn't explain (or at least I don't recall them talking about it) and I didn't think about is that this treatment has a good possibility of causing early menopause.  Plus side to this, no more monthly periods.  YAY!  I mean what is really the point of those if you aren't having kids anymore.  On the flip side, I'm not sure I'm ready for menopause and all the symptoms that go with it.  Fatigue, irritability, sleep problems (probably isn't helping that it is 4 AM right now), weight gain, hot flashes, osteoporosis the list goes on.

Another issue that I have read about on my RC forums etc. is called vaginal stenosis.  This is when the vagina due to scar tissue from radiation shortens or closes up!  I didn't even know that was fucking possible!  Ladies complain that they can't even get a tampon in there without pain.  Sex usually brings tears to their eyes, and not the good tears!  Really? WTF!  The concern is for the doctors is that they still need to be able to do pap smears because it is possible that the cancer could spread to the vagina (but lets hope not!).  It is not that pap smears aren't important for a variety of health reasons, but in this case it is not  my biggest concern. Seriously, this issue has caught me completely off guard!  My doctor says not to worry too much about it, they are typically more concerned with this particular side effect when treating patients with anal cancer or differing types of vaginal cancers.  I hear her saying that, yet I see women all over the RC boards with rectal cancer posting about it.  It is instances like this where the internet truly isn't helping.

Burn baby burn

So at the start of my 4th week of radiation I started to feel the true affects of radiation therapy....the burn.  Or as RC patients call it, the butt burn.  My mom for weeks had been asking how my skin was doing.  I guess I wasn't paying attention or maybe didn't truly understand what she was talking about.  I have a tendency to enter into certain situations not wanting to know all the details.  During my first pregnancy I was the mom that didn't go to the birthing classes....probably should have done that.  Oh well, it worked out well anyways, my baby girl is going to be 4 in about a week.  So anyways back to the burning question, what is the burn?  Well when you go thru external radiation your healthy tissue in that area breaks down and that includes your skin.  When my mom was asking about it I assumed that she meant my butt cheeks would get burned, yay, no!  I'll blame my stupidity here on chemo brain.  Everything from the taint back is like the worst sun burn you could imagine.  I dread having a bowel movement with every fiber of my being.  After talking it over with my doctor, she suggested that they tape my cheeks open during radiation, as if radiation couldn't get more embarrassing!  Now instead of laying there on the cold table with my cheeks to the wind, I lay there like a filleted fish.  I didn't realize until almost 2 weeks later that when they tape me "open" they actually tape me to the table.  I'm literally trapped by a roll of scotch tape!

***WARNING***  It may get a little gross from here out, just saying.
I couldn't really tell you if the filleting has really helped my situation, shortly after talking to the doctor the first time my burn peaked (or at least lets hope so) and started to weep.  The skin was dying and sloughing off...EW!  I didn't even know what to do with that.  My biggest concern is infection, it isn't exactly the cleanest part of your body.  The burn is painful and itchy.  I switched to boxers because they don't rub up against my skin.  I've tried different creams, etc. but the only thing that helps (and only slightly) and doesn't interfere with radiation (zinc oxide will make the burn worse if not all off before treatments) is Aquaphor.  That and a frozen bag of peas that are currently sitting in my fridge labeled "butt peas, do not eat."  To be honest the best thing to do is let it air out like a diaper rash, but it isn't like I can just walk around with no pants on all day.  At times is uncomfortable to walk, but it is unbearable to poop.  Thank God for my diaper sprayer, aka bidet and baby wipes.  I tried tylenol for awhile as it helps take the edge off, but only slightly.  My doctor prescribed me pain medication to take about 30 minutes before a BM.  She told me to take the first one in the evening to see how it affects me.  They are fast acting narcotics, but the affects last but a few short hours.  HOLY CRAP!  I took my first dose this week after the kids were tucked in bed.  Within 30 minutes the room started to spin and my pain was gone.  It was like being drunk without the calories or the nasty hangover, I get why so many people become addicted to these things.  In the last couple days the pain has subsided a bit, so I try to avoid taking to many pain pills.  They are a double edge sword, they take the pain away for a little while, but they also make you constipated....as I already explained it hurts to poop!

Next week is my last week of radiation, I hear it is the worst.  The last three days they do what my doctor calls bursting.  During the 28 treatments, the first 25 treat the larger pelvic area in order to ensure positive margins, the last three treatments attacks only the tumor and lymph nodes themselves.  From how my doctor described it the last 3 treatments require a higher dose of radiation.  In other words the fallout from the last 3 treatments may be a bit worse for my already sore butt.

Sunday, January 22, 2012

Well at least its not....

My third week of radiation has come to a close and thankfully the last couple days have treated me well.  No repeats of Tuesday morning...YAY!

Sometimes I find it hard to tell some people I have rectal cancer.  Just seems dirty in away, almost shameful, but I don't know why.  I think it is a stigma we put towards are bowel movements.  It's like when you have gas and you are mortified that someone might hear you or worse smell it, but why everyone has gas sometimes.  Shit happens!  The other part of me wants to share my story, colorectal cancer is not just an old person's disease.  It is the 3rd most commonly diagnosed cancer for both men and woman worldwide.  So why do we never hear about it, especially in young people?  Probably because 9 out of 10 of these people who are diagnosed are over the age of 50.  I just can't figure out why I got this.  I'm not over weight, I eat right, I don't smoke nor do I drink excessively, I don't have any type of family history with cancer (not just colorectal cancers but no cancers!), I probably could use to exercise more but I'm not that out of shape.  So what caused this?  Is the devil just f-ing with me?  I'm still waiting for Demi Moore's boy toy to jump out and tell me I've been Punked!

As you can imagine, I am at the hospital fairly often, sometimes it feels like I am there all day and that's because sometimes I am there all day.  Daily radiation followed by lab work and other appointments and sometimes even appointments for my kids (obviously not related to my cancer treatment).  As most people do when they are waiting for what seems like forever in the waiting room you make small talk.  So Tuesday afternoon I was in the waiting area with Tommy.  An elderly couple started talking to me (I get in more conversations with elderly couples when the kids are with me, I don't know maybe it reminds them of their own family when they were younger) and somehow along the way it was mentioned that I had cancer.  The lady asked if it was breast cancer and I said no it's rectal cancer.  Her response was "Well at least its not breast cancer."  Please don't misunderstand me when I say that I was a tad irritated by her comment.  I understand the seriousness that breast cancer can impose, that all cancer can impose.  My issue is that her response seemed to imply that my cancer was less concerning than others.  I have stage III rectal cancer, I certainly think that deserves a little bit of concern!  I still have almost a year of treatment left, not to mention that after April I may be pooping into a bag of the rest of my life!  Ok I get it, she probably was trying in some way to make me feel better, but all it did was irk me.  Talking with Dennis, he said he would get the same thing when he would tell people he had melanoma, people would be like "oh they just burn that off, right?"  No, no they don't!

I guess what you should take from that story is that if someone tells you that they have cancer don't give them the "it could be worse scenario" or trivialize it.  Cancer is serious, regardless of stage.  Every cancer patient and immediate family member knows the worry and the dread of every scan.  Sure your test results come back and tell you that you are NED (have No Evidence of Disease) and you breath a huge sigh of relief, but that feeling that it could come back is real.  That doesn't mean we live our lives in fear, it is just that we respect the reality of life.  My husband has been NED for just over two years, we do our best to live our lives to the fullest, even had a second child.  However, I do still stop to say a prayer when he goes in every 3 months for his checkups.

Tuesday, January 17, 2012

My 3 day-er

MLK day weekend for me meant I got 3 days off of radiation and chemo.  I have to say the weekend didn't turn out quite to my expectations.  For starters, Tommy came down with a cold, runny nose and low fever, on Saturday morning.  You could tell he just felt like poop.  I'm not sure why, but my kids always get sick on a Friday so I either have to take them to the ER or wait out the weekend with them.  We waited it out, ear infection, second time in a month!

Dennis and I traded off kids from time to time so we could get Maddie out of the house for a bit.  It was freezing here in DC, so not a whole lot of options.  Yes DC has a lot of museums, but they aren't the kind that a 4 yr old is going to love.  Dennis  took her out to the "crazy pool" at Cub Run community center on Sunday evening.  I guess I should clarify, we call it the crazy pool, but really it is an indoor pool with some slides and a water park for tots.  I would have loved to go myself, but the Tron lines still on my backside, courtesy of the radiation techs, fatigue and Tommy's cold kept me here at the house.

Monday was also a slow day.  Stayed in and my friend Maggie headed out here to the burbs to visit me and bring us some awesome food.  Monday night I went back on the chemo.  I guess my body was enjoying chemical hiatus because it was pissed when I started up my pills again.  I took my pills a bit late and headed to bed around 11.  I had a hard time sleeping and from 12 to 1 AM I felt nauseous, but not enough to pray to the porcelain god.  I finally fell asleep and woke up abruptly with sharp pains in my abdomen.      The pains came in waves, like contractions during labor.  I alternated between lying in the fetal position in my bed and crapping my brains out on the toilet.  This went on for at least an hour before the pain subsided and I could finally get back to sleep.  My oncologist had stocked me with meds so I at least had something to combat the diarrhea.  Today I woke up exhausted but the pain seemed to be gone.  I was told that the radiation may cause inflammation and the pains I was having may be associated with that.  I see my radiation oncologist tomorrow and hopefully find out more about the cause and what I can do to combat the issue should it happen again.