I finally wore out my welcome

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!

Unexpected surgery

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.

Meet me in St. Louis

The 'lesser photographed' side of the Welcome to Las Vegas sign

Ta-Da, I’m back!  This phrase happens to be the personal credo of a dear friend, and I found it quite appropriate in this case after a long hiatus from the blog. I ended the last update indicating we were in the process getting second and third opinions regarding the next steps for dealing with the growing cancer throughout my liver and lungs.  In addition to doing just this, we’ve also made some big moves. Literally. After working out a telecommuting arrangement with my office, we packed up our house and officially relocated to St. Louis.  This was a plan that had been in the works for a while, and with the latest rounds of scans detailing my health was not yet stable, we recognized the importance of being closer to family in order to deal with the challenges this next set of treatments was about to bring us.  For those of you who may not know, Nick’s family resides in St. Louis and we also have an established network of friends, colleagues and resources here.  While we wanted to consider moving back to Minneapolis where many of my family and friends reside, the sheer idea of the cold, long winters froze that thought right in its place and we haven’t revisited it since!

After a whirlwind packing episode, two friends from college – Joe and Jenny – flew out from Michigan to help us make the drive.  Before we know it, we were on the road with a tightly packed 26′ U-Haul truck, my car, four rotating drivers and two Siberian Husky co-pilots.  Twenty-six hours and 1,610 miles later we arrived at our quaint little rental home in St. Louis. (For anyone that’s interested in our new address, I’ve added a Contact tab at the top of the site.) We are now ready to face that which lies ahead of us: the next (and hopefully final) round in this fight against cancer.  Although strong and optimistic, we’ve prepared ourselves for this to be one of the toughest battles yet. Stay tuned for a series of updates that will bring you up to speed on our current cancer-fighting progress…

Sir Isaac Newton once said ‘What goes up must come down.’  In the case of the Akerberg’s, however, they who move westward, must eventually come back.

March, 2003: Em and Nick move from St. Louis to San Diego

October, 2011: Em and Nick move from Las Vegas to St. Louis

Game on

We’ve had a busy past few weeks. Since I last blogged we: celebrated our first wedding anniversary, Nick decided to head back to school to pursue a Master’s degree in Sustainability, and we received news my cancer has progressed.  Ugh. If you haven’t noticed already, the ride on this emotional roller coaster is still in progress. So, how did this happen?  Throughout the past few months, I have been on Avastin, an antiangiogenic drug that starves tumors from their oxygen supply by preventing them from growing new blood vessels – thus killing them (in theory).  Although this was the intended effect of the drug, my tumors proved a bit more ‘resilient’, in the tactful words of my oncologist.

After my last heavy duty round of chemo this past spring, the lesions in my lungs had completely disappeared and the lesions on my liver had significantly decreased in both size and number, marking tremendous progress.  My latest PET scan, however, showed the lesions in the lungs were back and the liver lesions had increased in both size and number.  Follow up blood tests (via measurement of a CEA level) concluded that the cancer had, in fact, progressed, however my doctor was quick to point out that while my CEA registered at a 9, last February – prior to the rigorous chemo – it had reached a level of 15.  A healthy person has a CEA of 1-3.

Obviously this was not the news we were hoping for, yet my oncologist remained very optimistic that this was all treatable and that remission was still a viable and realistic goal.  He proposed two different treatment plans – both an aggressive and a conservative approach.  The aggressive plan entails another round of a new chemo drug, while the conservative plan involves treating with an antibody that would attack the cancer cells. As of now, we are inclined to lean towards the more aggressive plan – if these tumors want to play hardball, then game on!  Before we begin the next course of treatment though, we’re in the process of seeking a second opinion; nothing wrong with confirming we are on the right track to beat this once and for all.  Stay tuned, as more updates will be forthcoming within the week.  In the mean time keep us in your thoughts and prayers…and keep your seat belts fastened at all times on this emotional roller coaster!

The story of Dick and Jane…or something like that

So imagine this…Amazing girl meets incredible boy. They fall in love and graduate from college. When deciding where to move to, the boy suggests they go to a far away town, where his parents have a second home; they can start a life here.  Girl agrees.  Coincidentally, the girl’s brother and sister also live in this far away town. A few weeks after moving to the town, the sister gets some bad news. She has cancer. The next fourteen months are the hardest she would ever know. But the amazing girl is by her sister ‘s side every step of the way. She entertains her at chemo appointments, helps her in and out of hospital beds, refashions her wardrobe to accommodate an ostomy bag, and watches as she slowly regains her strength.  One day, the girl has an epiphany. True to her very nature, she decides she wants to do something to contribute to the world and make it a better place. She knows she has to go back to school so she can become a teacher. The amazing girl and the incredible boy move back to the far away place that they came from so she can pursue this dream.

I know you’re thinking this sounds just like one of those Dick and Jane tales you used to read.  But it’s not…it’s actually the story of Em and Jane.  Today my sister Jane and her boyfriend D.J. moved from Las Vegas back to Portland where she’ll begin a program to obtain a Master’s in Montessori Education.  While I am extremely proud of her, it was so hard to watch her go.  I can’t help but think it was no coincidence that she arrived in town just weeks before my diagnosis…I think she was brought here by the cancer angels.  And now that she’s moving on, maybe that means this battle is almost over?  We will know soon.

This past week I finished the last of three chemo treatments.  Unlike the past few rounds of chemotherapy, the particular drug I received this time – Avastin – has no debilitating side effects.  After Labor Day, I go in for another PET scan to evaluate the progress and determine next steps.  Fingers crossed the scan is clean and shows no remaining lesions.

While this particular chapter of Em and Jane has come to an end, I anxiously await what the future chapters will hold!

The best birthday present ever

It’s funny how things change as you go through life.  When I was younger, I eagerly awaited my birthday party each year.  I would plan it meticulously down to the theme, the cups, the napkins, and the friends I invited. As I grew older, it wasn’t the parties that mattered so much, rather the cultural milestones such as my 16th and 21st birthdays.

And now here I am turning 30 years old today.  Despite the lack of balloons and streamers hanging from the ceiling, I was elated when I learned my sister Jane would be getting a colonoscopy on my birthday.  It arguably runs a close second to the Pretty Pretty Princess showing up at my 8th birthday party, however, knowing my sister is getting screened for and could potentially prevent the hereditary onset of colorectal cancer is quite possibly the best birthday present imaginable.

The patient is all prepped and ready to go! Seriously, how many people can manage to look this good in a hosital gown?!

Fortunately the procedure was over just as quick as it started and the results were in…she had a clean colon, making it an even better birthday present!  Just having this piece of mind will let me sleep better at night.  And now there’s just one sibling left to go in for the screening process, my brother.  I’m sure he’ll surprise me with a really great Christmas present…right Bill?!

On the up and up

Aloha! Since my post two weeks ago, I’m happy to report that I’ve returned to work full time and even managed to make it to Hawaii for the State Bar of Nevada’s Annual meeting.  With my husband – a.k.a. male nurse, bell boy, and official island tour guide – in tow, we left a week ago Sunday for Kaua’i.  I’m an infamous over-packer, but I managed to reach new heights on this trip, as I had packed enough medical supplies to set up a remote triage center.  Thankfully everything went incredibly well and I only needed a fraction of what I brought.

The Hawaiian culture has a rich history filled with stories legends. I’m typically not the kind that gets caught up in any type of mythology; however I must say, there is definitely something magical about the islands.  Immediately upon arriving, any aches and pains I was experiencing from my wound (which is still approximately an inch wide and an inch deep) immediately vanished for the entire week I was there.  I was blown away by the amount of energy I had, and the physical tasks I was able to perform.  Even a week prior to the trip, I wouldn’t have even fathomed being able to accomplish half of what I did.  Interestingly enough, on our way back home, we had a layover in Los Angeles and the moment we landed I began having a dull pain in the wound area.  I got to thinking…might it be best if I went on disability and moved to Hawaii?!

Our week in Kaua’i was very busy, filled with meetings, seminars and work-related social activities, but we managed to find a few moments to escape the hustle and bustle and enjoy the island as tourists.  One afternoon we went kayaking on the Wailua River and after an ill-described ‘amateur’ hike, we arrived at a secret waterfall.  I’m sharing this photo in hopes that everyone can enjoy it, because it literally took blood, sweat and tears to reach this location! (Okay well maybe not tears, but you get the point).

The 'secret waterfalls' of the Wailua River

The next day we were in need of a more relaxing excursion and opted for a catamaran boat tour along the Napali Coast.  You may be familiar with this scenery if you’ve ever seen Jurassic Park – much of the movie, including the scenes from the helicopter were shot from here. (Please ignore the distended stomach and matronly bathing suit…I’m hoping they both are temporary!)

Em & Nick along the Napali Coast of Kauai

All in all, it was a successful trip – personally and professionally. I am so fortunate to have such supportive colleagues that aided and encouraged me the entire time. Being able to return to work is so therapeutic for me, as it represents a sense of progress and accomplishment.  Now that it has been a month since my surgery and I’ve had a few weeks to heal, next week I’ll begin the first in a series of IV treatments to help prevent any continuous metastatic disease.  Then, at the end of summer I’ll have another PET scan to asses the current situation…fingers crossed the scans are clear and there is nothing to be seen.  I’ve had enough of this cancer thing.

365 days and counting

I woke up this morning knowing that although today should seem like any other ordinary day, it wasn’t. Exactly one year ago today I was diagnosed with cancer.  I remember it like it was yesterday. It was a Tuesday and I was anxiously awaiting biopsy results from the mass the gastroenterologist had found during the colonoscopy I had the previous Friday.  It had already been four days and I had no more patience – Jesus managed to rise from the dead quicker than these results were coming in. Around 10:30 in the morning, I couldn’t wait any longer and finally called the doctor’s office to speed up the process.  Now, it is not customary to receive these type of results over the phone.  However I was not about to go through the process of setting up an appointment, paying an unnecessary co-pay and going in for an office visit just to obtain this tiny, yet oh so important piece of information.   When the nurse informed him I was on the phone, he obliged and took my call (in hindsight, probably the first indicator of the news that was to come – doctors are never available to take patients’ calls).  I was ready with a pen and paper in hand to take down notes throughout this highly anticipated conversation, however when all was said and done, I had only managed to write down one word: malignant.

After having been pacing around my office, I found myself frozen in my tracks.  I numbly dialed Nick’s cell phone and tried to relay the conversation but it was at that point that the information caught up with me and I was swallowed up by tears. Nick, on the other hand, was able to remain calm and reassuring (at least on the outside), and was at my work just a few minutes later with the most comforting embrace imaginable.  It was at that very point that the fight began.

Throughout these past 365 days, I’ve learned why the word ‘battle’ is often used when describing one’s dealings with cancer.  You don’t typically hear people say “She is working on cancer” or “He’s making his way through cancer”. It truly is a battle in every sense of the word, and I have no doubt that I have become stronger person as I’ve fought my way through this.  I am constantly reminded, though, that not everyone’s battle takes the course that mine has. Just yesterday, I stumbled across the blog of a young woman whose fight against cancer had too many striking similarities to mine it was scary. She grew up in Minnesota and was diagnosed with colorectal cancer in her 20s, just weeks before her wedding. She underwent the same course of chemotherapy (same drugs and all), and radiation treatment, followed by surgery and then had an ostomy bag. Like me, her cancer spread to her liver and her lungs, but her organs eventually failed and her battle ended less than two years after it started. I had chills as I finished reading her CaringBridge website.  (The foundation her family launched in her honor can be found here.) While I do my best to maintain a lighthearted approach and positive outlook throughout this process, I am also keenly aware that there is also a very real and nasty side to this beast, and I thank God everyday that I have been as fortunate as I have.

June 15th is a date I will never forget, yet I hope it will soon return to being just another day, and be replaced by other memorable dates, such as the date I am told I am free of cancer – the date I kicked ass cancer’s ass.

No laughing matter

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

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.