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I finally wore out my welcome

23 Dec

After a mere 19 days in the hospital, the doctors finally decided enough was enough.  I was released on Monday evening and the taste of outside freedom was the best Christmas present I could ask for.

A bit more on the surgery…

In my mom’s previous update, she noted the doctors were able reroute some plumbing to enable proper flow through the digestive system.  Prior to the operation, they had some speculations on what was causing the blockage, such as inflamed tissue (a common side effect from radiation) or fecal build-up; this is not what they found, however. Instead they discovered another tumor that had begun to grow in the small intestines, and it had finally reached a problematic size.  While this was devastating news, it wasn’t all that surprising. Over the past few months we’ve continued to monitor my CEA level and it had been on the rise.  This additional tumor now helped explain why.

Surgery recovery…

After surgery, the next big milestone I had to accomplish was to actually prove my bowels were working again. I asked the doctors how I could speed up the process of having a bowel movement. Walk, they said. For some people, it only takes a day for their system to be restored.  My bowels, on the other hand, continued to lie dormant for eight days as I walked lap after lap around the hospital corridors.  It was only on that eighth day that they decided to wake up…and I guarantee you’ve never seen a more excited person on the toilet than at that moment.  If it hadn’t been 4:30a.m. I would have started calling everyone I knew to share the good news.  But the good news was short lived, as other issues began to arise.  After a few days, my surgical wound – a 10″ vertical scar down my abdomen held together by 17 staples – began to show initial signs of infection.  The doctors removed 13 of the staples to clear out the infection, which left me with a gaping wound.  They cannot sew up an incision once it has been opened, therefore I had to have a wound-vac put on – a device that provides negative pressure wound therapy via a vacuum. I had to wear one of these last year after my surgical incision became infected and they had to re-open it.  Depending on how fast the wound heals, I could have to wear this device for up to a month…ugh.

Home sweet home…

While I still felt very weak and was experiencing a lot of pain, I was so excited when I was told I could go home earlier this week.  I quickly found that the recovery process sped up when I was in my own surroundings.  Within 24 hours I was able to decrease the amount of pain medication I was taking and each day I’ve noticed my strength and mobility improve.  I still have a good 4-5 weeks of recovery ahead of me, but I am well enough to be able to enjoy the upcoming festivities and celebrate Christmas comfortably.

What’s next?…

With the discovery of this new tumor, plus the existing ones on the liver and lungs, and any additional ones we may not know about, it’s obvious we have our work cut out for us.  As Nick says ‘We’re running a marathon and thought we were at mile 25, and then realized we are only at mile 3.’  We clearly have our work cut out for us.  We do have a treatment plan in place and I will share more about that in my next post.  In the mean time, enjoy the holidays with your families and know I am eternally grateful for all the love and support that continues to come our way!

Initial surgery update

7 Dec

Now that Emily has assigned me to blog duty, I want to update everyone that Emily’s surgery went well.  The doctors were able to reroute her “pipes” in order to prevent any future blockages.  She is now back in her room and resting comfortably.  Her recovery needs to be swift…..Nick has plans for rock climbing this weekend!

Please keep the prayers coming; we appreciate every one.


Unexpected surgery

6 Dec

For the past week I’ve been playing a game called Waiting for the Bowel Movement.  I can assure you this is not a fun game and I hope I’m never a contestant again after I get done with this round.  It all started last Wednesday when I checked into the ER  at Barnes Jewish Hospital with unbearable abdominal cramping.  Several hours later I was admitted for supervision and some tests, yet by the end of the next day it was clear my bowels were not moving.  I’ve now spent six days in the hospital with no food or water (only IV drip) and countless X-rays, CT scans, and blood draws…and we’ve now arrived at the last resort – surgery.

Today at 4:00 p.m. I’ll have the culprit, an inflamed portion of my small bowel, surgically removed.  This is a similar surgery to the one I had last year (when the tumor portion of the colon/rectum was removed), but I’m told this procedure will be less complicated and quicker (1.5 – 2 hours in duration). Unfortunately it’s difficult to give any more details than this because much of it depends on what the doctors actually see when they get in there.  Recovery time is estimated at one week in the hospital followed by four weeks at home.  Obviously I’m hoping to speed this up so I can be in tip-top shape for Santa later this month…call it my Christmas wish!

While I never wanted to see this result in surgery, I’m excited at the thought of there being some relief in sight (after the recovery, of course). So, please send prayers and good vibes this way and check back later for updates…my mom will be on blog duty.

No laughing matter

8 Jun

I’ve been home from the hospital for nine days now and am happy to report that recovery is going well. In addition to sleeping at least ten hours each night, I nap anywhere from 2-4 hours everyday.  Probably the hardest part of recovery is the inability to utilize my abdominal muscles.  It’s not that I’m purposely trying to craft some chizzled abs for summer, however one doesn’t realize just how often you rely on your stomach muscles to get through the day.  Sitting down and standing up has become a tedious effort.  Sneezing is the most painful thing in the world. And laughing is anything but fun; in fact, it’s rather excruciating.

To help the wound in my stomach heal as quickly and efficiently as possible I have a home health care nurse that comes to the house everyday to pack and redress the opening in my stomach.  Basically, an open wound heals quicker when it is ‘touching’ something, so 7-9 inches of shoestring gauze, pre-soaked in iodine solution, is inserted into the 2 cm deep hole.  This is referred to as ‘wet to dry’ packing because the gauze is wet when inserted, then dries while inside the wound and is removed the next day. To be honest, I haven’t noticed a huge transformation in how the surgical point looks now compared to the day of surgery, but the nurses assure me it is healing nicely with no sign of infection.

Speaking of transformations, my husband has turned into a new person over the past few weeks, becoming a gourmet chef and household caretaker right before my eyes.  True story: a month ago Nick called me because he had gotten lost on the way to the grocery store that is all of 3 miles from our house that we’ve now lived in for 4.5 years.  I’ll be honest, I pretty gave up any remaining hopes of him becoming a skilled homemaker at that point.  However he has since turned over a new leaf and become a handicap patient’s dream, preparing freshly cooked meals and cleaning the house from top to bottom!  Now only if he would stop trying to prove how funny he is by making me laugh…

Pipe dreams

31 May

Well as Jane reported, everything went well with the surgery and I left the hospital yesterday afternoon, exactly 72 hours after the procedure. I began eating solid foods the morning following the surgery and the doctors predicted I should start passing gas later that afternoon, and should have my first bowel movement the next day.  I was right on schedule with everything and have never been so excited to use the restroom and test out my newly restored plumbing.  I have several friends who are in the process of potty-training their children, and I felt just as elated as they are when praising their child’s first excrement…maybe even more so!

Getting rid of my bag has been the greatest feeling in the world, however there have been several times where I’ve experienced ‘phantom leaks’ – the sensation of my bag leaking, even though it’s not there any more.  The area on my stomach where my stoma was protruding is now a hole about the size of a dime.  Before going into surgery, the doctors gave me the option of having the hole closed completely, which would heal relatively quickly but leave a significant scar. Or, they could leave a small opening when closing the wound in order to let it heal on its own from the inside out, resulting in a longer healing time but less scar tissue.  I opted for the latter.  The resulting wound actually looks like a bullet hole.  I joked with my nurses as they were changing the bandages, “you should have seen the other guy!

Today was my first full day home, and I slept most of the day.  After my horrible experience coming off pain killers following my previous surgery, I vowed I would never go through something like that again. I’m hardly on any pain meds at all; I would prefer some minor pain and cramping any day over the grueling detox process of the pain killers.

While everything has gone well so far, I know I still have a ways to go before my bodily functions can even remotely be described as normal, and all the wounds heal.  Thanks to everyone sending their love, prayers and support these past few days, as well as to all the visitors I had.  While in the hospital, the doctors encouraged as much walking and activity as possible.  During one of my many strolls through the corridors, I found myself hoping that the next time I’m a patient in the hospital is when I’m ready to deliver a child…not a moment before then.  And a new goal is set.

No More Sack Attacks

27 May

I’m glad to be designated to blog duty to report some much-anticipated news…the surgery went off without a hitch! I was at work all day, so much of what you’re reading is what has been relayed to me.

The surgery in it’s entirety was about an hour and a half long procedure and included a little more than reversing the ileostomy.  Dr. Browder, Em’s surgeon, was prepared to essentially blast or cauterize any cancerous lesions she could see on the liver.  Fortunately, she didn’t have to put her light saber (or whatever it is they use) to use because she couldn’t see any lesions to attack!  Given the position of the liver and surrounding organs, however, she was only able to see about 50% of it.  If there are any lesions on the top and/or back side of the liver, they wouldn’t have been able to be burned during this surgery simply because they are inaccessible from the location Dr. Browder was working on.  We’ll talk about that another time.

Once Em came out of surgery Nick met her in the post-surgery recovery area while they waited for a room to be assigned.  In true Emily fashion, her first words to Nick were (while still being groggy from the anesthesia), “So how are my double-D’s?”


I got here shortly after 6:00 and the nurse was trying to control Em’s pain and administer correct doses of pain killers.  She’s comfortable now, and was slightly drowsy…until her red Popsicle arrived.  Last fall, she was on a strict diet of water, ice and Popsicles for quite awhile, but this time around that diet will only last for the duration of the day.

Nick and I grabbed a bite to eat at a little Louisiana kitchen down the street called Lola’s while Em snoozed for a while.  The place was quaint and felt like we were in New Orleans…even though neither of us have ever been there to compare it with.  Anyway, there was a live band playing some classic Southern music and a little Stevie Wonder (one of my personal faves) and the music, as good as it was, was so loud that we couldn’t hear each other talk.  I said to myself, “For once!  There’s something that keeps my brother-in-law’s mouth shut!”, because if you know Nick, you know how much he likes to talk.  He knows I’m teasing, and he knows how grateful we all are that he’s taking such good care of Em and is there at her every beck and call.

Anyway, after 174 days of carrying an unpleasant accessory/annoying apparatus, my sister is finally ileosotomy-free, looking forward to a future of no more sack attacks!

Until next time, folks!

So long, stoma

27 May

The day has finally arrived…tomorrow I FINALLY get my ileostomy closed!  While some might be apprehensive about an upcoming surgery, I am giddy with excitement.  What was initially set to be a 4-6 week inconvenience has turned into a 29 week nightmare. I think most would agree I’ve maintained an upbeat attitude throughout this entire process, however I have definitely struggled to have a positive outlook when it comes to my stoma and ileostomy. Perhaps my outlook may have been different if I knew it would be a permanent fixture on my body, as some people have; however because I knew this would be temporary, I’ve been finding every reason to be annoyed with it. Not only has my bag resulted in unacceptable tan lines this spring, it has also been the cause of numerous trips home from the office in the middle of the day due to leakage…ugh. Well, in 12 hours from now, the process of closing the ileostomy and reattaching my small intestine to make a complete digestive track will be well underway.  The surgery is scheduled for 1pm Pacific and should last about an hour.  After that, it’s estimated I’ll spend the next 2-5 days in the hospital before being released.

Tonight Nick and I went out to celebrate a ‘Sans Stoma’ dinner…a nice hearty meal before the clock reaches midnight and I can no longer have any food or drink.  Of course, my bag started leaking towards the end of dinner and we rushed home to change it.  As I showered and replaced it with a new one, I took one final look at the two ends of the small intestine protruding through my stomach in hopes of never having to see it again (the next time my ostomy bag will be removed is once I’m finally under anesthesia). Nick will be at the hospital with me during the procedure, and Jane will be on blog duty afterwards.  As usual, I’m just asking for your thoughts and prayers as we get through this next step. C’est la vie, stoma!

Third time’s a charm

19 May

There’s been a lot that has taken place these past few weeks, and it seems like each piece of information has hinged on the next.  I had my fourth (and final!) round of chemotherapy on April 15th.  Once this step was completed, it was time to assess the progress of the treatment I had just survived.

Step I – The PET Scan

After a grueling recovery from chemo and its symptoms, I went in for a long-awaited PET scan.  This test would measure the progress of the 12 weeks of chemo hell I had just been through.  Similar to all the other scans I’ve had done in the past, I always look for some sign of immediate results from the radiology technician, but by law they are not allowed to directly provide me with any information or interpretation of the scan.  Instead, the radiology technician provides the radiologist with the scan images, who in turn must interpret the scans then send a written report to my doctors outlining the findings.  Then, my doctor has to find time – in between a triple booked schedule – to call and relay the results to me.  This process takes at least 48-72 following the exam, even when I talk them into putting a ‘rush’ order on the results.  Despite this ‘rush’ order, the information can’t come soon enough. I often find myself questioning whether or not my doctors have ever been in the position of waiting on a written report to tell them whether or not they have cancer…I doubt it.  While awaiting the results, I make every attempt at questioning the radiology technicians via some method of reverse psychology  in an effort to achieve some sort of reading to my scans.  I find myself psychoanalyzing their facial expressions and asking myself if their arched brow means they saw something of concern.  I ask childish questions such as, Okay, while you can’t tell me what you saw on the scan, can you tell me what you didn’t see? Ugh. They never fall for it – and I’m left waiting.

Finally the phone rings and the results are in…starting with the lungs: previously there were 13 lesions…now there are NONE!  Liver: previously there were nine lesions…now there is only one!  Colon: just a lot of scar tissue (to be expected post-surgery).  All in all it’s great news and a phenomenal response to treatment.  Now, it’s onto the next step.  Can my ostomy be reversed and can we get rid of this bag…lord knows it’s long out of style and hindering my daily activities.

Step II – The Barium Enema

Now that my oncologist is satisfied about my response to the most recent chemo treatments, I have clearance to reverse my ileostomy. However, before that can be done, they need to make sure there is no leak around the area where the original tumor mass was removed and the colon reconnected.  This is my third time going in for this particular test, and it’s not a fun one.  Fortunately luck was on my side this time and the x-rays showed no more leakage…third time’s a charm!  Within seconds of learning these results, I was on the phone with my surgeons office to schedule my surgery.  I got the sense that her nurse was a little weirded out by the fact that this patient on the other end of the phone was so excited for surgery.  Despite this, I got everything booked and I will be bag-free and have my small intestine fully intact as of next Friday (May 27th).

Step III – Stay off the Internet

Now that I have my ostomy reversal scheduled, I can’t help but be inquisitive about what the recovery will be like.  I already watched a demonstration of the entire procedure (which will take 30-45 minutes) on YouTube so I will know exactly what will be done.  But then I took it one step further and started reading medical forums related to other patients’ experiences with ileostomy reversals.  The picture they painted wasn’t very glamorous.  Most complained of a lot of soreness and diarrhea following the procedure, and one person even reported having to work from home for nine months following his procedure because he couldn’t stray too far from the bathroom.  After reading this, my bag didn’t seem like that much of an inconvenience anymore.  Then I kicked myself, realizing that I can’t focus on these people’s accounts; after all, it is human nature to be far more inclined to discus our negative experiences than to tout the positive ones.  That’s when I closed the computer and tried to mentally reverse the damage that I had done by planting these negative seeds in my head.  My doctor indicated that I could plan to be back to work in 4-6 weeks following the procedure.  I haven’t told her yet that I have tickets and travel plans to Hawaii for a work event just three and a half weeks following surgery…I’ll save that news for another day!

What the doctors don’t tell you

24 Jan

My blog posts have slowed down a bit recently, which has been a direct correlation to my energy level.  I’ve had a difficult past few weeks and it wasn’t really something I was prepared for.  Since commencing my cancer treatment, I’ve signed countless release forms, acknowledging endless potential side effects ranging from loss of salivary glands to internal bleeding to death.  However, there’s one thing that none of my doctors warned me about…addiction to pain medication.

I had been on one type of pain medication or another since my surgery in the beginning of November.  By the first week in January I had progressed enough that I decided I didn’t need any more pain meds, so I stopped them.  Cold turkey.  It was only then that I realized I had developed an addiction.  Not a mental addiction, but a physical addiction.  My gut instinct was to feel slightly ashamed; how had I let this happen?  I shared this with some family, friends and doctors, only to find this is more common than one might think.

My doctors had been so quick to prescribe endless amounts of pain medication, but never provided the instruction manual for discontinuing it.  I think I’m going to offer to write one for them to give patients.  It would read something like this: Before going to bed, place three spare t-shirts next to your bed.  You will sweat profusely through all of them before morning comes, yet manage to have goose bumps on your arms the entire time.  Plan to exert 300 times the effort, only to accomplish 20% of the work.  Your legs will sometimes shake with tremors – just ignore this.  You will be exhausted the entire day, but won’t be able to sleep.  Once you are almost through the withdrawal process, your adrenal glands will be completely reversed and your energy will bounce back to normal levels…at 2am.  At this point, quit your day job and try to find a graveyard shift you can work.

Needless to say, going through this process was difficult.  After quitting cold turkey – and being miserable – I did some research and found that most doctors will tell you never to quit instantly, but rather to wean yourself off.  So I gladly resumed the pills for a short while in order to gradually come down.  It’s now been a week or so and my energy and internal clock are finally falling back into place.  So what’s next?

I continue to sport my ileostomy bag – it’s been 12 weeks now, but who’s counting?  In order to get rid of the bag my new GI tract has to be leak-proof, however I failed the last leak test they performed.  So we wait a few more weeks and try again.  In the mean time, I’ll be getting another CT scan done to assess the remaining lesion on the liver.  Depending on the size (if it’s shrinking, maintaining, or growing), we’ll determine the next course of action to treat this area while we’re waiting for the plumbing down below to seal.  While there is still a lot of work to be done, I remain optimistic.  During my last visit to the oncologist’s office, I informed him that I turn 30 this summer and that I plan to be cancer-free by this time.  He thought this was a completely realistic goal, which was reassuring.  It’s been a long time since I was this excited for my next birthday!

Happy New Year

4 Jan

Happy 2011!  I’ve taken a little break from blogging to enjoy the holidays with the family.  After spending a relaxing Christmas with Mom visiting in Las Vegas, Nick and I ventured to St. Louis for a belated Akerberg Christmas and for the beautiful New Year’s wedding of our friends Andrew and Angela.

Needless to say, 2010 has been a year unlike any other.  It began with energy and enthusiasm – wedding planning was well underway and in addition to my full time job I was teaching three college classes with 85 students.  Soon after my classes had finished – and 82 days prior to my wedding day – I received my diagnosis of cancer.  Since then I’ve:

  • Spent 100s of hours in doctors’ offices
  • Endured 28 sessions of radiation
  • Undergone 7 rounds of chemotherapy
  • Harvested my eggs to make 10 frozen embryos
  • Had 3 colonoscopies and 1 surgery
  • Spent 24 days in the hospital (across two visits)
  • Become a VIP customer at Walgreen’s filling a record number of prescriptions

…And it’s not over yet.  There’s been some medical progress since I last posted – I finally had the drain in my butt cheek removed five days before Christmas…needless to say it certainly was a Merry Christmas after that happened.  However, as seems to be the trend, with progress comes other setbacks.  After having the drain removed, the only apparatus I’m currently sporting is my ilieostemy bag, and up until recently it has given me no problems.  That is until last week.

I was very excited to start working full days in the office, and I’ve even managed to put together some bag-friendly work outfits!  Last Tuesday I was sitting at my desk in my nice cream colored wool dress pants.  Around 11:30 I looked down only to see my bag had started to leak…ugh!  Not knowing whether to cry or laugh, I ran down the hallway to explain the situation to my amazing and incredibly understanding boss.  Within minutes I was in my car and racing down the highway to get home.  This was one time that I wasn’t really concerned about getting a speeding ticket; I was pretty confident that I had a good reason, and was sure any officer would let me off the hook at the sight of fecal matter making its way through the front of my pants as I handed them my license and registration.  Fortunately it was a non-issue and I made it home in record time.  But the drama doesn’t end there.  Fast-forward to New Year’s Eve.  We were with the Akerberg’s at the elegant Chase Park Plaza, dressed to the nines and enjoying a midnight cocktail when all of a sudden I knew I had sprung another leak.  What a way to ring in the New Year.  Nick’s mom, Nora, rushed me back to the house and assisted as I cleaned up and changed my bag.  This is by no means a glamorous process and she was the ultimate trooper!  And if that wasn’t enough, I experienced a third leak while waiting for a delayed flight in the Memphis airport on our way back to Las Vegas…not a fun flight home.  Nick continues to joke that I’m dealing with my own wiki-leaks drama!

So what’s next?  This week I go in for another imaging test to see if the new ends of my colon and rectum have fully attached together and made a secure connection.  They do this by injecting a liquid dye into the area.  If it shows up outside of the colon, it means there is a leak and more time is required to heal.  Fingers crossed there is no leak, which means I’m ready for the reversal surgery where my surgeon will tuck my protruding ileum (small bowel) back into my stomach.  End result?  Normal bowel movements and no more bags.  After all, the only bag a woman should sport is on her shoulder!

In the mean time, I’ve decided to start 2011 off with the same enthusiasm and vigor that I did 2010, in hopes that it will carry me towards a successful win over this battle with cancer.  This, however, has been much easier said than done so far as my energy levels aren’t what they used to be.  Here’s hoping that all that – and more – will be restored in this new year!