Signing Off

3 Mar

I am sure many of you have gotten word that Heaven received a beautiful angel today.  Emily passed peacefully in her sleep at 7:30 this morning.  I have been in St. Louis for a week now, and consider myself so blessed to be with her for these past few days.  Even though this time was the roughest part of her journey, Em had a way of keeping her wits about her and making us all smile at the most unexpected times.

A few days ago, she shared with us that she wanted to do one last blog post to let all of her followers know that she was “signing off.”  Of course, in true Emily fashion, she began by thanking everyone for their unconditional love, support, and prayers, and was apologetic for not having posted anything since Christmas.  She said there wasn’t a day that passed without her praying and praying for a miracle, but that this time, it just wasn’t meant to be.  She said she’ll be waiting at the pearly white gates to give us all a tour. 

We are arranging to have a funeral service in Minneapolis, hopefully next weekend, with a great celebration to follow, per Em’s request.  Further details are yet to be determined.

From all of the family, thanks to each and every one of you.  We all know what a precious gem my sister was.

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.

Toni

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.

Meet me in St. Louis

22 Nov

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

18 Sep

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

21 Aug

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!

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