Showing posts with label Cancer. Show all posts
Showing posts with label Cancer. Show all posts

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, December 24, 2011

Second Opinion

So you always hear people tell you to get a second opinion before you do anything drastic.  We talk a lot of talk, but when time and emotions get strained that doesn't always happen.  With Tommy, we just didn't have the time to get a second opinion.  Luckily we had the best doctors in our area to perform his procedure and save his life.  I know that the cancer in my body needs to be dealt with swiftly but on Thursday night I told my doctor that I wanted a second opinion.  I just am not ready for such a drastic surgery that would require a permanent colostomy and a permanent lifestyle change.  My doctor seemed a bit hesitant at first, her main concern is time.  She stated that the longer it takes to get a second opinion the longer it will take to start treatment and thus giving the cancer a chance to spread.  However, she also said that she would have a referral put in on Friday and recommended a place in Fairfax that she was familiar with.  She said don't worry about Tricare for the moment, make the appointment and we'll figure out the insurance side later.  She also said she would call the place in Fairfax and make sure that they have all the information necessary to formulate their opinion, MRIs, CT results, etc.

Next morning, before I even had the chance to wipe the sleep out of my eyes, Dr. H calls. She has already talked to Dr. S in Fairfax.  Not only can he squeeze me in today for a consult, but he can also do a rectal ultrasound there (instead of waiting to do it on Tuesday in the military hospital).  I should mention here that the place in Fairfax is called Fairfax Colon and Rectal Surgeries; this is their specialty they deal with cases like mine all the time.  So I gave them a call and scheduled the appointment.  Couple hours later I'm in the office for my second opinion!  I've never seen military medicine move so quickly!

When I arrived at the clinic, first thing I had to do was sign a waiver for my insurance.  Since my referral for care wasn't quite thru the system yet, the waiver pretty much said if my insurance doesn't approve the visit than I will have to pay for it myself out of pocket.  Whatever, I would like my insurance to cover this visit, but if they don't well we will figure it out.  After the paperwork was done I went in to see the doctor.  He talked to me a bit and said that he had talked to Dr H about my case.  He said the the big determining factors for treatment was a. the location of the tumor and b. the stage (i.e. how deep it is and if it has spread).  After that little chat, you can imagine there was yet another digital exam.  I don't think I can count how many times I have one of those this week.  Way to many fingers up my butt this week!  Next they did the ultrasound.  Sorry folks no sedation.  I will say that compared to the scope Dr. H used the day before, which seriously was the size of a baseball bat, the ultrasound was a walk in the park.

So on to the important stuff, the doctors findings.  Dr. S showed me the ultra sound photos, he explained that my tumor was fairly deep and actually butted up to vaginal wall.  That isn't great, because if they did surgery now, he said it would be likely they would have to take out part of the vaginal wall as well.  (WTF!  Sorry, but really?  We are going to have to mess with that too?)  He also showed me the two enlarged lymph nodes that were also suspect on the MRI.  The nodes are still indeterminate, but to be honest with you I don't think they will be able to say my lymph nodes positive for cancer until they take them out and test them.

So what does all this mean?  Here is his recommended plan of action:

1.  Chemo-Radiation for 6 weeks.  There was no question in his mind about this one.  All the tests show that in cases like mine, chemo-radation would save my life and give me the best possible chance of beating this thing once and for all.
2.  4-6 weeks recovery.  During that time I would see the surgeons again, either Dr. H or himself to determine if they would have to do an abdominal perineal resection and give me a permanent colostomy or if they would be able to do a low anterior resection and save my ass (or in this case my asshole).  He did tell me there was a chance that he would be able to stitch me back together, but it will depend on how the tumor reacts to the radiation.  He also warned me that nothing will be certain until he is actually performing the surgery.  He could get in there and find that it just isn't possible to save my hind end.
3.  Next would be the surgery itself and recovery.  Recovery time is about 4-6 weeks.  Depending on the type of the surgery they do I will either have a temporary or permanent ostomy.
4.  After I recover from surgery I will need full dose chemotherapy for 4- 6 months!  This had not been mentioned before (or at least I don't remember it being mentioned) so that news was a bit shocking.  At the end of chemo, if I had a temporary ostomy, than it will be removed at that time.

Full length of treatment: 9-12 months

Some other things he mentioned.  Dr. S said that with rectal cancer you have to attack it aggressively, if you don't it will most likely have a local recurrence that will kill you.  He said with radiation therapy I could drop my chances of a recurrence from 30-50% down to about 3%.  I asked about the chemo after surgery and he said, yes that is absolutely imperative in order to treat the rest of my body.  If I make it 5 years after treatment without a cancer recurrence that I will have officially beaten this.

After our visit he talked to Dr H and discussed his findings and his recommendations for treatment.  She than called me just to let me know she was aware of his recommendations.  The ultrasound findings pretty much confirmed her suspicions about the lymph nodes and her recommendations for chemo-radation.  On Tuesday she will be talking to my oncologists to go over my case again.  She said to be "on call" because she will be pulling me in at some point to have another consult and if possible she will arrange for general surgery to have my catheter put in place for chemo.  She also said that she would continue to send me out for second opinions if necessary to get the answers we need (chemo-radation upfront gives us a little more time for this) and that when it does come time for surgery that if she was not comfortable performing a particular procedure that she would send me back to Dr S to do the surgery.  All sounded great to me....ok well maybe not "great" but it was nice to know that I had such an aggressive advocate in my corner.

So until next week I am going to spend my time in denial.  It is Christmas after all and I want it to be a joyful holiday.  On Monday we will return to the issue of my treatment, but until than Merry Christmas everyone.

Thursday, December 22, 2011

A Whirlwind Of Information

So last night I did a slew of tests, namely an MRI and CT scan.  Both of which included some sort of dye being ingested and/or injected.  Now I have had a lot of poking a proving over the years, but never an MRI.  Lying there for 45 minutes reminded me of crawling around in the torpedo tubes of a submarine when I was a midshipman back in college.  Besides prepping for the tests, the scans went by quickly and without major incident.  I didn't receive any results last night so I came home to play the waiting game.

Last night I didn't sleep well.  I'm not sure if it was from worrying about the results of the scans or that my 15 month old was also not sleeping well.  I had a full day ahead of me; appointments and consults with Colon-rectal Surgery followed by Hematology-Oncology and than Radiation Oncology.  I arrived at the hospital before 8 AM.  My appointment was so early that the radiologist hadn't even had the time to read my scans yet.  They placed me in the exam room and I waited and waited and waited.  After 30-40 minutes passed the Colon-rectal surgeon Dr. H came in and started to go thru my case with me.

First the good news, my cancer is not metastatic which means it hasn't spread to any other organs.  The bad news is that I have what appears to be two lymph nodes that are suspect.  This means that the cancer may have spread to my lymph nodes, but they aren't certain.  If the nodes are positive or if they aren't able to determine that those lymph nodes are in fact cancer free, than I will most likely have to endure chemo-radaition therapy before surgery.  If the nodes are negative for cancer, I will just need to have surgery to remove the tumor.  Unless of course they find something during the surgery and than I will have to do chemo-radiation after the surgery.  Fun, fun, fun!  Now the ugly, I am told that I have rectal cancer in the lowest possible point of my rectum.  For the doctors to surgically remove the tumor they must also remove enough healthy tissue around the tumor to achieve what is called positive margins.  Because of where my tumor sits and how much healthy tissue they will have to remove, they will also remove my ability to control my own bowels.  Long story short I have an almost certain chance of having a colostomy for the rest of my life.

<Rant>

I'm ok with the radiation and chemo, I can come to terms with that.  My hold up is the colostomy.....really a poo bag for the rest of my life!  I'm only 31!  How do I do all the things I like to do, like go to the beach, swim, travel etc when I have no control over my bowels?  I realize I'm no Cindy Crawford, but how do you feel sexy with a poo bag attached??

<Rant Complete>

So after a long discussion about the specifics of my cancer I had to get examined.  For those of you who have never endured the such an invasion of privacy, I hope you never do.  I lost a lot of care about these matters when I was pregnant, but even all the prodding that comes with pregnancy did not prepare me for this.  I will spare you the specifics.

After the meeting with Dr. H, I was shuttled off to see Dr. L, my hematology-oncology doctor.  Another overview of the findings followed by another exam.  Then off to Dr. K from radiation-oncology...guess what another overview of the findings and...wait for it....an exam!

Seriously though, it was a lot of information to take in today.  I got a lot of questions answered, but there are still some outlying questions to be addressed before we proceed with therapy.  To start off I have to get a rectal ultrasound so that the doctors have a better idea of what they are dealing with, like how deep the tumor may go and hopefully they will get a better look at the lymph nodes that appear suspect on my MRI.  The ultrasound is scheduled for next Tuesday.  Thankfully I will be somewhat sedated for this procedure (images of alien abductions just flashed into my head).  I know that my doctors, especially my colon-rectal surgeon has been working with her colleagues up in Bethesda to get their professional opinion on how to address the removal of the tumor (they all agree that there isn't much hope for saving my ass....literally), but I have also requested for a second opinion if time allows.  I am tentatively (depending on the results of the ultrasound) scheduled for surgery on Thursday.  If the civilians (I get seen at a military hospital) can't get to me within a week or so we may have to readdress the situation, as cancer is a somewhat time sensitive disease.            

Needless to say, today has been a day of information overload.  I think now I will grab myself a glass of wine and go into denial for at least a little while.  Tomorrow is another day.

Tuesday, December 20, 2011

My Roller Coaster

My life for the last 3 years has been a constant medical roller coaster.  It all started back in August of 2009, my husband was deployed to Bahrain when he called to tell me he was diagnosed with skin cancer.  Unfortunately it wasn't the kind of skin cancer that you could just burn off and be done with it; it was melanoma and it was deep in his lymphatic tissue.  He was medivacced back state side and they began the staging process and treatment.  Thankfully the cancer had stayed in his arm and after several surgeries the doctors believed that he was cancer free.  He also started in a clinical trial early the following year.  Surgery and screening is really the only treatment for melanoma.

When the dust had settled from Dennis' cancer we decided to try for our second child.  I know it sounds crazy, but we wanted two kids and we weren't about to live our lives in fear of the cancer or what may or may not happen.  In September of 2010 I gave birth to a healthy 9 lb 12 oz baby boy, Thomas.  All was right with the world or so we thought.  At 6 months Tommy started showing signs of gross motor delays; the doctors gave me the line "babies progress at different times."  At 9 months I brought him again and finally someone took notice.  About a month or so later he was scheduled for a MRI of his brain.  He was diagnosed with a very rare (by rare I mean 25-30 cases in the US each year) AVM known as a Vein of Galen Malformation (VOG or VGM) and hydrocephalus.  It was the worst day of my life.

Now you may be wondering "What in the world is VOG?" Google it, it is really not the easiest thing to explain.  I will say that 20 some years ago they weren't able to save kids with VOG, now a days they can save 70% of babies born with this.  Of that 70% some of those babies still have lasting problems, seizures, strokes, cerebral palsy and mental delays.  Tommy was lucky though, he seems to be one of the milder cases.  On the 12th of July he had his first and hopefully his last embolization.  He is showing no lasting effects from his VOG and has been in physical therapy to address his gross motor delay.  He will continued to be monitored to ensure he does not need future treatment.

It has been just over six months since our last medical catastrophe.  Seriously, what else could possibly go wrong.  Well a lot I guess.  Over the past couple of years I had been suffering from what I thought was internal hemorrhoids.  I know, it's not a glamorous thing to be afflicted with, but lets face it shit happens.  When Dennis was deployed I had them checked out and was told that they were hemorrhoids and I could have them removed if I wish.  Well as explained above life happened and removal of said hemorrhoids was postponed.

Fast forward to present day.  Last month I decided to go and see a colorectal specialist and she was suspect to what this "hemorrhoid" really was and requested I have a colonoscopy done.  So I did, yesterday in fact.  Not a very fun thing to do and something I never expected I would do at the ripe old age of 31.  When all was said and done the doctor told me about the mass they found, but that she didn't believe it was a hemorrhoid.  She had taken a biopsy of the mass, but she felt given my age and the consistency of the mass that it most likely wasn't cancer.  Well today I get called not once but twice by the doctors office saying that they want to talk to me today about the biopsy results.  I knew immediately that it was bad news.  Sure enough I was right, Cancer.

I don't know much more information than that I have it.  I don't know if it is localized or if it has spread.  At first I was terrified but my terror has quickly turned into anger.  I'm pissed!  I have been dealt more shit in the last 3 year than some people see in a lifetime.  I am an otherwise healthy 31 year old with a wonderful husband and two small children.  I live a very low risk type of lifestyle.  What the hell have I done and who the hell did I piss off to deserve all this?  Who knows; it is what it is and now it is time to deal with it.  To turn my anger into something productive I'm starting this blog for a couple of reasons.  First being to keep friends and family updated on our state of being.  I feel like Facebook is not the environment in which I want to share this type of information.  Secondly I'm using this blog as a way to push out all that negative energy.  I'm hoping that writing about my day to day trials may help me cope with all of this stuff that keeps falling into my lap.  Who knows, maybe my ramblings will become of use to another family dealing with similar issues.

I will do my best to continue to update my blog with what is going on with my crazy family.  I'm sure as I go thru the staging process I will have more to share.  Until then, wish us luck.