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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.


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…

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!

Taking medicine into my own hands

12 Dec

This blog post is a bit delayed, but I wanted to bring everyone up to speed on recent progress.  I came home from the hospital this past Tuesday evening (December 7th), but my release was due in no part to modern medicine, in my humble opinion.  A week ago today, last Sunday, my morning started out with receiving news that I would need to be in the hospital another 5-6 days.  I didn’t take this well, considering I had already been in the hospital a week.  Basically they had found a pocket of bacteria near the surgery site and needed to determine the right medication to to fight this infection.  In order to do this, the lab was growing samples of the bacteria culture and then treating them with various antibiotics to find the appropriate medicine. In another life I may have seen this as a fun science experiment, but now that it was requiring 5-6 more days in the hospital it was another story.

At this point, a switch inside me turned on.  If I was going to be in the hospital that much longer, I was going to own this place, make it my own.  I immediately informed my nurse that my dogs would be coming in to spend the day with me.  Then I called up Nick and told him to pack up the kids and a travel bag and bring them on down.  After all, sometimes the best cure doesn’t come from a pharmaceutical company or from someone licensed to practice medicine.

To be able to spend the day with the family...priceless

The dogs behaved wonderfully and were a big hit with the nurses!  Later in the afternoon, Jane came by armed with Christmas decorations, holiday ornaments to decorate, a movie to watch, cookies and hot cocoa.  For a day that started with gloomy news, it certainly finished on a positive note.  But it didn’t end there.  On Tuesday afternoon I was informed they had finally landed on the right concoction of antibiotics and that I could go home – four days ahead of schedule!  I’m a firm believer that it was a positive attitude and some answered prayers from the big guy upstairs that allowed for this change in plans…and I was certainly thankful for it.

Holiday cheer - hospital style

Since arriving home on Tuesday night, I’ve spent the past few days slowly recovering and gaining my strength back.  Laying in a hospital bed for over a week definitely takes its own toll on your body.  I began working half days from home on Wednesday and will aim to start work full time tomorrow (from home, to begin with).

I was originally scheduled to have my ileostomy reversed (bag removed and small bowel put back inside me) this coming Friday, however a test showed there is still a small leak at the new connection point, signifying it is not completely healed yet.  This surgery will now be pushed back until 2011.  While I was looking forward to spending the holidays bag- and cord-free, it looks like that will not happen.  I also still have a catheter strategically placed in my upper right butt cheek that is continuing to drain the infection.  I have my fingers crossed that this fun apparatus will be removed in the coming week.

In the mean time, I hope everyone is managing to enjoy the holiday season that seems to just be flying by.  It appears we won’t be getting Christmas cards out this year so we wanted to make sure and wish everybody a happy holidays and say that we are forever grateful for the continued well wishes!

Just can’t get enough of this place

1 Dec

Apparently there is a strong subliminal force linking me to UMC Hospital because I’ve found my way back into one of their beds.  Over this past weekend I began having problems urinating, despite the copious amounts of fluids I continued to consume.  On Monday morning, I called my surgeon at 6:30 a.m. (something I have no problem at all doing – I feel I’ve earned the right)!  She advised me to go to urgent care and get a urinary tract infection test; Nick and I were there right when the doors opened.  Although the results came back negative, I began to experience acute abdominal cramping and the doctor suggested we head to the emergency room for follow up tests and a CT scan.  Within minutes we were sitting in the waiting room of the ER that was connected to the same hospital where my surgery was performed.  Over the next few hours we went through the exhausting registration process, were assigned to a bed, had over a dozen vials of blood collected, and finally underwent a CT scan.  The test results showed a collection of fluid located behind my bladder and in front of my *new* rectum – not a good sign.

The next step was to extract this fluid, as it was essentially a form of infection, and hopefully the other symptoms would then be alleviated.  I was officially readmitted into the hospital on Monday evening and received a warm friendly welcome from the same nurses who had cared for me less than two weeks prior…wonderful.  The procedure to extract the fluid would take place the next morning (Tuesday).  A radiologist performed a needle-guided CT scan whereby he used CT imaging to guide him to the exact location of the fluid.  He then inserted a hollow needle down into the cavern of fluid and suctioned out the infected liquid.  Like any other CT scan, I was not put to sleep, rather they used a local anesthetic, Lidocaine, to numb the surface area.  This did next to nothing to curtail the pain and pressure during this ten minute procedure.  At the end, however, I was presented with two large syringes full of bacteria-ridden fluid…success!  But it didn’t end here.  In order to make certain they get every last drop they left a hollow wire inside me which is now attached to a hose and vacuum apparatus that hangs from my right butt cheek.  In case anyone is keeping score, I now have a wound vac (helping to heal the main surgical incision) hanging from my lower left abdomen, an ileostomy bag (collecting my diverted fecal matter) attached to my central right abdomen, and a hose (suctioning out infected fluid) hanging from my upper right butt cheek.  I am beginning to feel like a puppet with all these cords and hoses attached to me – and affecting my every movement.

I am keeping my spirits high that I will be saying goodbye to the hospital staff soon again, here.  The doctors have opted to keep me a few more nights in order to administer some antibiotics and to keep an eye on the immediate progress from the procedure.  I will have to have another small procedure to remove the vacuum from my behind, but I’m hoping that may happen as soon as Friday.  Additionally, I’m hoping to lose my wound vac within the next few days, as the doctors are very pleased with the speed of healing on the once-infected incision.  That would leave me with just the ileostomy bag, which I am tentatively scheduled to get rid of on Friday, December 17th when I go in for another surgery that will consist of reattaching my small bowel together and allow for the normal digestive flow into my new rectum for the very first time.  All these exciting events on the horizon are keeping the energy in the hospital room positive, along with everyone’s continued support…oh, and Nick’s ill-fated attempt at cracking endless ileostomy jokes – those alone require pain medication!

There’s no place like home

19 Nov

Finally going home!

Well it finally happened.  After 15 days in the hospital, I was finally released this past Wednesday and I must say it was one of the greatest feelings of freedom I’ve ever experienced.  As indicated in previous posts (which are still a blur to me as I re-read them), following my surgery on November 3rd, I was on track to be released within 4 days – the doctors were very pleased with my initial signs of recovery.  However things started to not look so good as I developed an infection in one of the wounds.  Needless to say the extended hospital stay was quite necessary, but as I continued to improve, I also continued to grow more stir-crazy; the last few days were especially restless.

Now that I’m at home, I am adjusting to a temporary different way of life.  Due to the wound infection I developed, they had to open the sutures to remove all of the bacteria.  Once the wound had been opened up, they couldn’t just stitch it back together again.  Instead, they re-dressed the wound with the assistance of a ‘wound-vac’ which creates a negative pressure system that helps wounds heal 40-50% faster than normal.  There is now a small hose that runs from this wound into a vacuum system which will accompany me everywhere for the next 2-4 weeks.  Every three days a nurse comes to the house to put fresh dressing on the wound and ensure that recovery is as expected.

I previously mentioned I would be sporting a colostomy bag post-surgery.  Well I was mistaken – it is an ileostomy bag.  A colostomy bag is used when the contents of the colon are redirected; an ileostomy bag is used when the contents of the ileum (or small bowel) are redirected. During the digestive process, food hits your ileum before your colon, therefore my entire digestive system past my ileum is essentially shut down for now and being diverted into a wonderful pouch that is secured onto the front of my stomach, thus allowing everything below this point to heal.  I empty the pouch 7-10 times a day and change it out every 3-5 days.  This whole experience has really provided me with a crash course in anatomy, as I can literally see my pipes through the bag…when I was bored in the hospital, I would eat something, and then time how long it would take to see it come into the bag!  Albeit temporary, wearing this bag makes one feel less than stunning, so please feel free to send any fashion-forward tips for concealing a decent-sized plastic pouch on the front of your belly that contains no-so-appealing contents…

Em and Nick enjoy 'date night' at the hospital

While there is still a long road of recovery that lies ahead of me (i.e. another surgery in 4-6 weeks to reattach the small bowel in order to remove the ileostomy bag, and a cancerous lesion that still remains on the liver) I appreciate everyone’s thoughts and prayers throughout this arduous process.  Your positive vibes allowed us to remain upbeat through challenging times, which goes a long way.  A quick example: one difficult part of this entire process was that Nick had to travel for work a great amount of the time, so I was so thankful to have Mom, Dad, Bill, Jane, Nora and Jan around throughout various times of my hospital stay.  One evening however, Nick showed up and surprised me when he was supposed to be out of town.  We took advantage of the few hours we would have together and enjoyed ‘date night’ – which consisted of several laps around the hospital hallways, but not before getting all decked out. I ditched my hospital gown for a new silk robe that was given to me, brushed my hair and put on some lipstick (the hospital socks and IV cart accompanied us on the date)!  At a time when I was feeling so miserable, it was the strength that everyone else was sending that enabled me to muster up the ability to make this happen.  Thanks again for all your support, I am constantly reminded I am not fighting this battle alone!

Two steps back and hopefully one cartwheel forward

9 Nov

Greetings from Las Vegas!  I flew in from Minneapolis Sunday night and came straight to the hospital.  Jane promptly informed me that I was now on blog duty, so an exhausting two days later, I’m here with the next update for you.

Emily was making great progress the first couple of days following surgery last Wednesday, but by Saturday a few complications were setting in.  She hadn’t eaten or drank anything since the day before because she was experiencing cramping and bloating in her abdomen as well as acid reflux.  The doctors decided she should stay another night with plans to go home on Sunday.  But by Sunday she wasn’t improving.  She was even more bloated and extremely dehydrated, claiming that any time she even tried to take a sip of water she felt the onset of heartburn.

Dr. Browder ordered an X-Ray first thing yesterday morning, but because the X-ray was only a one-dimensional view, the doctor then ordered a CAT scan to get a three-dimensional view to determine what was going on.  This immediately brought tears to Emily’s eyes knowing she’d have to drink an entire bottle of barium, a liquid used to coat the stomach so the doctors can easily read the CAT scan images.  In an attempt to alleviate the mere thought of having to drink 3 cups of fluid, Emily and Jane resorted to playing drinking games.  Was this a flashback from the college days, or what?!  With a deck of cards, a bottle of berry-flavored barium, and water, the mission was accomplished half an hour later.  Jane took a few sips of barium herself to help Emily along…..but we somehow failed to mention that part to the nurses.

Em and Jane playing drinking games

The hard part next was waiting more than two hours for the barium to do its job….on Emily as well as Jane!  Then, another two hour wait to get the results from the doctor, which revealed severe blockage.  A tube was then inserted into the opening of the stoma (the part of the intestine her bag is hooked up to) and another tube, called an NG tube, up her nose and down her throat into her stomach to pump out more bile.

Emily was extremely uncomfortable and had the IV for morphine hooked back up along with another catheter inserted.  By this point it had been three days since she had eaten and the mere smell of food made her nauseous.  After being at the hospital for 9 hours, we thought we’d let her rest.

It is now Tuesday morning and Emily is feeling better.  The drainage tubes seemed to be serving their purpose and she has released about a quart of the fluids that were backing her up.  She was taken away for another X-Ray of her bladder because the doctor noticed there was air in front of the bladder, and just wanted to make sure everything was working properly.

Emily has a whiteboard in her room indicating the date, her nurses names, and personal goals they write for her.  For the past few days Emily’s personal goal, as written by the nurses, was “to get better pain controlled.”  This morning Jane and DJ brought in some dry erase markers to write some new goals for Emily:

Personal Goals

I know Emily will reach her goals…she is truly an inspiration.  Please remember that every prayer does count.