Sept ’12 – Greetings from New Orleans

Hello Everybody!

Thanks for your patience while the site has been under going a re-design. I hope you like the changes. I am optimistic that the new layout will make for easier navigation for new visitors to the site, and will allow returning visitors to pick up where they left off.

I’m actually writing this entry from my hotel room in New Orleans. We are back for our 4th visit in 12 months. The first being last December when we initially consulted with Dr. Eugene Woltering and Dr. Phillip Boudreaux. Today is Monday and on tap for today was a CT scan and Octreoscan (day 1). Will complete the Octreoscan tomorrow morning, and will visit with the docs on Wednesday morning. These appointments are for my 7 months post-surgery follow-up.

I’m looking forward to a productive meeitng with the team here. Since surgery, my carcinoid related symptoms have been minimal, and at times non-existent. My CgA, 5-HIAA and other markers have been near normal, healthy individual levels (which I am loving). But the healing process from the surgery may not quite yet be complete. Mostly, I’m back to my usual routine, but have had times of excess abdominal fluid build-up (a condition called ascites), which have resulted in 3 separate  paracenthesis procedures at my local oncologist’s office. The Chicago team of docs seems to think the ascites is due to progression of the disease, but that doesn’t add up for me. So agian, I am very much looking forward to hearing what the New Orleans team thinks about my current condition and what could be causing the ascites. Plus, am anxious to get further information on what’s next for me.

Will do my best to update again soon with my take-aways from our New Orelans trip,  and to get the New and Improved site completed very soon!

All my best!

Kari

Dec ’12 – Welcome to my new site

Welcome to my new site! It’s been a long time coming. Sorry for the delays and long windows between updates. This entry will act more as a test for me to make sure everything is in working order. I’m sure if you browse the site though, that you’ll enjoy the new layout.

Coming soon will be a fall update on how I’m doing. Stay tuned!
Oct 13, 2012

A Whole New Look – 12/16/12

OKay, so it’s probably time that I update everyone on my actual condition. Just like most people I know, we’ve certainly had a busy year. And with trying to find a new look and format for my website, the updates just have been too slow to come. But alas – we are finally there and I can now easily and more frequently update my posts. I’m hoping to not only keep you up to date on how I’m doing, but share insights and thoughts related to the Carcinoid community, or even just life in general. I’ve learned by now that I’m not the only one out here with Carcinoid and there are so many wonderful examples of strength and courage in the cancer community in general.

If you’re looking for even more frequent ramblings from my life, feel free to follow me on twitter @CarcinoidStory

Oh my god, did I just say “…on Twitter”? I remember just 6 short years ago (when I was diagnosed) how hard it was to find anything on the internet that was reliable (besides a few excellent sources listed here). But it was just so hard to even find anyone with my disease. Now, especially if you’re reading this, you’re probably somehow personally affected by this disease and we know we are not alone. Thankfully, in the 6 years that I’ve been playing this game called “Beating Cancer”, the online community has grown and support systems have been formed. Thank goodness. Hopefully we can all learn from each other and all win in the end.

So here’s my update. You’ll have to excuse me if I only hit on the major points. It’s now been nearly 11 months since my liver surgery and, as you can imagine, a lot of things can happen in that time. I would like to tell you that everything has gone completely according to plan; I healed and recovered without any issues or concerns; and that everything came up roses by summertime. But that just wouldn’t be true. And by highlighting some of the challenges I’ve faced after such a major surgery, I hope others might find comfort if they too, at this time, are struggling with their own recovery or health issues.

1) The Good: At this time, my CgA and 5HIAA are still near normal levels, just slightly outside of the range of a “healthy” person. Previously, these numbers were off the charts and a serious indication as to how bad my disease was. But now, with 90% of my tumors having been removed during the surgery, my bloodmarkers are excellent and the symptoms related to Carcinoid (flushing, specifically for me) have been minimal. (Minimal = 3 or 4 times in the last 11 months. Would previously flush at least 3 or 4 times PER day!).

2) The Bad: Strange but true – although none of my liver was resected during the surgery, enough mass was removed that there was some liver regeneration. It has grown back in a “weird” sort of way. Also, Dr Beudreaux (surgeon) during my surgery inserted “chemo-gel” packs into the crevasses that were created where the tumors were removed. The affects of this chemo on my liver has positive implications, as it’s meant to kill any microscopic cancer cells that still may have remained in those areas. However, it has caused some serious confusion in how it looks on MRI scans (i.e. – what looks like a tumor, is actually the affects of the chemo-gel pack still showing up). This is something that we are actively working on figuring out. Never mind the challenges I already face with trying to coordinate care between  my local team in Chicago and the team at LSU/Dr. Woltering’s team.

3) The Ugly: As stated above, my insides are just “weird”. The liver has shifted, the stomach is now pressed, and my inferior vena cava is being squished because of this. Throughout the months, I’ve had sporadic episodes of ascites (fluid build up in the abdomen) and the current running theory is that this is because of the constriction of blood flow and fluid through that aforementioned vena cava. During my “best’ ascites episodes, I looked several months pregnant (something I’ve never actually been) and had to field such terrific questions as “When are you due?” I’ve had a paracenthesis (draining of the fluid) procedure performed three times. In September, I started on diuretics to help prevent fluid build up – which has worked. We may decide to put a stint in the vena cava, but won’t make that determination until after my next round of scans (MRI scheduled for Dec 19).

I could do a whole post on the crazy body issues I now have – as if women don’t already have body issues 🙂 But for this reason, 2012 will now always be “The year I was pregnant, but never gave birth”.

It wouldn’t be fair though to think of it as all bad. The surgery was certainly a huge success for me, and 11 months later I know I made a good decision to do such an aggresive and radical treatment. I feel better now than ever. I was able to travel to Gatlinburg, Tennessee with my husband and host a reunion for my cousins in June. We had our 13 year old neice visit us in Chicago in September. It’s been a fun, fantastic year. I couldn’t be more grateful for all the blessings that surround me.

 

When I started my first website, I often liked to post some of my favorite quotes (or something befitting of the post). I want to continue that here, in closing:

“Count your blessings. Once you realize how valuable you are and how much you have going for you, the smiles will return, the sun will break out, the music will play, and you will finally be able to move forward the life that God intended for you with grace, strength, courage and confidence.” — Og Mandino

Welcome to 2013

I imagine I have the same complaint that most people have these days…. I’m sick and tired of being sick and tired. Seriously, I’ve been dealing with the worst cold I’ve had in over 2 years. I generally like to brag about how, although I have cancer, I’m one of the healthiest people I know. I strive to eat healthy, exercise, take my vitamins, see my docs on time. Anything and everything to help me acheive my optimum wellness, despite living with cancer.  And it seems, for the most part, that this approach has worked well for me the last few years. I don’t know if because my body is constantly fighting cancer, that its a pro- at taking care of the little bugs? But I’ve been very fortunate to have not had the flu in several years, and generally avoid most colds. All without getting a flu shot (I don’t believe in their “affectiveness”), or taking too many unneccesary medicines.

Unfortunately, for Christmas this year, I seemed to have caught this annoying cold bug that even one week into the new year is still bothering me. Annoying! So needless to say, it’s been a hamper to my New Year’s spirit. But I guess it does allow for reflection on what is actually better these days.

Had my appointment with Dr. Al Benson (my oncologist here in Chicago) on Jan2 and he reported that my recent MRI showed that my disease was still minimal, and that the liver appeared to have improved over the previous scans (which were in Sept – and complicated by lingering after-affects of the surgery I had last Janaury). To be perfectly honest, it was nice to hear that they think everything is good, but based on all the confusion over previous scans – I don’t necessarily have 100% confidence in the reports. However, being that I’m feeling good, the blood markers are good, and I don’t really feel like dealing with any new stress at the moment, I figure I’ll go ahead and buy into the positive report. Even I don’t have the energy at the moment to argue about my condition. And to think – I’m generaly an optimist.

And on that note, instead of continuing to linger on about this annoying sore throat and cough, I’ll shift my attention to reflecting on how much better I feel over all compared to this time last year. January 26 will mark my 1-yr post liver surgery. (Note to self – start planning celebration.) Mind you, I wasn’t on my death-bed by any means, but the every day symptoms related to advanced cancer and carcinoid syndrome were just that – an every day occurrence. Recovering from the 10hr + surgery was more than I ever imagined it would be (who knew I wouldn’t be able to go sky-diving 3 months later?!). It certainly is nice, that a year later I experience very few symptoms related to carcinoid, and finally…. FINALLY… I am feeling almost like a normal human being. I can sleep normally – on any side! I can stretch without pain. My abdominal muscles are getting stronger. I can walk fast (or fast enough to keep up with the hustle and bustle of busy city folk). Dealing with this stupid cold at least has allowed me to fully appreciate how normal I feel I now. Woohoo! Instead of being slowed down by a surgery, I can be slowed down by the common cold… just like everyone else 🙂

In closing, I hope you all had a terrific holiday season and are well on your way to a healthy New Year!

“It is amazing how much crisper the general experience of life becomes when your body is given a change to develop a little strength.” — Frank Duff

Milestones

One year ago on Jan 26, I was sleeping. Sort of. Brian, his parents, and my mother were sitting patiently in a hospital waiting room trying not to worry. And wait they did. For over 10 hours.

One year ago tomorrow, I was sleeping through my 2nd major cancer surgery. Dr. Philip Boudreaux, of the NET Cancer Clinic at Ocshner Medical Center in Kenner, LA was leading a skilled team in attempting at removing as much cancer from my body as possible. They were ready to remove lymph nodes, and bowel sections, but thankfully, once inside they saw all of my cancer was still confined to just my liver. Their attention turned fully to this organ: my friend, my enemy, my liver. In 10 hours they removed nearly 90% of my disease. They counted every tumor. 37 surgically removed; 3 were killed by using nano-knife technology; 40 total tumors now gone from my liver.

Going into the surgery, we (Dr. Boudreaux included) were hopeful that maybe 75% removal would be achieved. The fact that nearly 90% was taken out was a huge achievement. So I will never begrudge them for leaving a few small, hard to reach tumors still in place. What he did that day is something other surgeons didn’t even want to attempt. My family, patiently praying and waiting for the surgery to end, are the ones that were truly courageous that day. I merely had the luxury of sleeping. As for when I finally did wake up, the story goes that the first thing I said to the nurses and doc was an enthusiastic question:

“Is anyone else having as good a day as I am?”

Somehow, perhaps sub-consciencely, I knew that I was coming out alive and that the surgery was a success. I don’t know that Brian has ever been more proud of me.

So here we are. One year later. Another milestone reached. It’s easy, after being diagnosed with cancer, to start noticing every milestone. Now, I can’t say for certainty (based on my own personal experience) if others mark events as often or with the same regularity as a cancer survivor. All I can say is – with my diagnosis it’s become quite easy to mark the time, and to remember and be aware of the amount of time spent living.

  • Jan 26, 2012 – Cancer Surgery #2. Not life saving, but certainly life extending. Here we are now marking one year later.
  • Aug 4, 2006 – Cancer Surgery #1. Removal of my primary tumor in my small bowel. This was life saving, and therefore affectionately referred to as my Re-Birthday (also of note, it was my parents wedding anniversary)
  • Aug 4, 2011 – The birth date of Eleanor Rose, my best friend’s first baby and the most beautiful baby at that. The 5 year anniversary of my own Re-birth now has a new reason to be celebrated. And every Aug 4 from here on out will be a celebration of her life, and all I get to look forward to as she grows.
  • October 10, 2010 (10/10/10 – affectionately known as one of those “Perfect 10” kind of days) – completed my first (and what will likely be my only) marathon. A race distance I never thought I’d live long enough, or have the strength enough, to finish. I was going to wait to do this to mark my 5 year cancer anniversary, until my older brother Josh (and marathon coach) stated the obvious: why put off another year, what you can do today?
  • May 28 – my own Birthday. Notable for many reasons, in that I share it with a twin brother (CJ – who’s distress over my diagnosis was not hidden from me. Is it really possible to live in a world without your twin?) and I share it with Brian’s niece (Sydney – who turned 7 that week when I was diagnosed). That’s right – my birthday in 2006 fell over the weekend that I had to wait for the liver biopsy test results that would ultimately lead to my diagnosis.
  • May 31, 2006 – my D day. 26 years old. A blessing every year to grow older. My advice to anyone – don’t be afraid to grow old. There are many in a year that don’t get that privilege.
  • April 11, 2006 – the birthday of Jorja Joann and Samuel Walker (my older brother’s twin babies). Their birthday is already special enough, but for me it also holds an extra reminder of where I was headed, and the start of an incredible journey. There’s a picture of me holding Jorja in the hospital when she was a day old. I am underweight, and too skinny, sickly looking – but smiling. Happy for the joy that my brother and his wife were experiencing. But this was the period of my life at which I may have felt the worst, and had absolutely no idea why. The next 6 weeks for me were filled with diagnostic tests and doctor visits.

Every milestone the twins reach is now also a milestone for me. And I love that and cherish it. You don’t get a diagnosis and hope to make it just a year. For me, I was determined to see them pass as many milestones as possible, and to dance at each of their weddings; filling every moment between my diagnosis and that far off dream with as much living as is humanly possible. I hope they do the same.

There are a lot of milestones in everyone’s life, and which ones we chose to celebrate or ignore is entirely up to the individual. But I know for me, and my circumstances, there aren’t too many months that go by without some sort of reminder of what it means to be alive, and to recognize how far I’ve come.

“The longer I live, the more beautiful life becomes.” – Frank Lloyd Wright

Springtime Reflections on Love

If you live anywhere near Chicago, you know it’s been a long cold winter. We huddled into our apartment and watched lots of movies, played games, and generally enjoyed ourselves making plans for what we would do when the weather finally turned warm.

Lucky for us, about the time we couldn’t stand the cold any longer, it was time for us to take our vacation to Myrtle Beach. In April, we first travelled to my cousin’s wedding in Nashville TN, which took place at the beautiful Belmont Mansion. After a weekend celebrating and enjoying time with family, we continued our trip down to South Carolina where we spent a wonderful week in the sun. It was our first trip to the area and we enjoyed our time on the beach, as well as exploring the small fishing villages and communities surrounding it.

One place we discovered that I especially loved was the Brookgreen Gardens near Murrell’s Inlet. This beautiful gardens, zoo, and low-country plantation was left to the state by its founders Archer and Anna Hyatt Huntington. It was the winter home of this famous couple from the late 1920’s-1940’s. Beyond being beautiful, we also learned of the special marriage between this couple, one that was filled with great love for each other, and philanthropy for others. It was evident that Archer had a deep love for Anna, as this winer home was built by him for her, to help with her tuberculosis diagnosis, of which she lived with for years. I immediately purchased a biography about the couple upon our return home.

This couple seems special to me, as Archer’s love for his wife is so apparent. He met her and married her after she was already a world-renowned artist, and never belittled her career. Instead he strongly encouraged her to follow all her interests and to continue to make art. When she was diagnosed with TB shortly into their marriage, it didn’t scare him off – instead it reinforced him as a steadfast and committed husband. Treatments available at the time were few and far between, and often required long periods of stay at sanitariums that were at higher altitudes or warmer locations. He never complained or wavered in his love, and he continued to provide care for her in whatever way possible throughout the remainder of his life. He willingly uprooted his life to move her to various locations around the world to help treat her condition. They did this regularly, and they approached it with a sense of adventure.

Their story is endearing, and resonates strongly with me. Brian and I were married less than two years at the time of my diagnosis (and I was certainly experiencing symptoms of the disease from the time we met). I once read that cancer can either bring a marriage together or tear it apart. And what an unfortunate thing it must be if it is the latter. I am blessed to have Brian, who has never wavered in his love for me, or his commitment to care for me. And for that, I will always be thankful.

Certainly we have fears about what may lie ahead, but instead of dreading these challenges – we shift our focus to living life fully and seeking out new experiences in the meantime. Brian continues to encourage me to chase my dreams. And hopefully, we’ll have many years ahead of us to do just that.

And on that note, I’m very happy to share that my most recent doctor’s visit was a very good one. We reviewed my recent MRI, which shows that now (nearly 15 mths after my surgery) my liver is looking very good, with no new tumors. Additionally, my CgA (bloodmarker) is that of a completely healthy person’s. My other labs are looking great as well. I currently experience very few symptoms related to Carcinoid, and at times will go several days or weeks without any symptoms at all. This is by far the BEST medical report I’ve had since my diagnosis, and is likely the closest I will come to saying I am in “remission”. It only took 7 years to get there, but I’m happy that I’m finally where I’m at right at this moment, and hope that I can make it last for a long time to come.

“To love and be loved, is to feel the sun from both sides.” — David Viscott, 1974

Bridging the Gap… Summertime fun and Autumn Travels

I won’t lie or hide it. I’ve been very blessed this year with good health and great adventures; extraordinary opportunities to travel, make new friends, and experience life to the fullest. So much so, that I am now faced with the challenge of bridging the gap between April and December.

Here goes….

 

The summer began with a big party to celebrate ICAN’s Five Year Anniversary. The Indiana Carcinoid Awareness Network (ICAN) is a group I started in July of 2008, when I still lived in the central Indiana area. I was diagnosed in May 2006 and no support group or networking group was available in the area. The closest meeting I could find was in Chicago, which I attended on occasion and was fortunate enough there to make good friends and realize the impact a local networking group could have in the Indianapolis area. I dreamed it up in early 2007, and establishing the group and building it to what it is today is something that I am most proud of. We are over 40 members strong, and we are more than just patients. We are friends and we are family.

Summer time parade watching!

The rest of our summer was filled with BBQs, Parades, car shows and our usual Chicago sight-seeing. We have really enjoyed living in Chicago the last three years and you just can’t beat the summer-time festivities.

 

When August began, so did a new job for me with Hyatt. Now 10 years into my career with the company, I had started a new job that allowed me to work on strategy and process improvements. It was an exciting time, as I was asked to take part in an assessment project that had me traveling to various hotels in Dallas, TX; Orlando, FL; and New York City; followed by two more weeks of travel to Europe, including stops in Germany (Mainz, Berlin, and Hamburg), Paris, France and the United Kingdom (London and Birmingham). I was traveling with just a few other Hyatt colleagues and a small team from Deloitte Consulting, and I can say with certainty that these were some of the most fun days I’ve had working. Not only was I able to visit some of our best hotels, but made new friends and new Hyatt memories. (Click HERE for Pictures of this trip)

The project lasted a little over a month, and I assumed my travels would be over. However, I was then approached to assist at our Regional Corporate office in Zurich, Switzerland for 4 weeks, to help with financial reporting and analysis. This 4 week project lasted from mid-October to mid-November and it wasn’t very long after my arrival that the position was offered as a permanent assignment. I was enjoying the work, and Brian and I have been hoping for a few years that we might have an opportunity to work and live abroad. This sounded like the perfect fit, so there really was no decision.

To take you back a few steps… A few years into my diagnosis, Brian and I took a step back to assess where we were in our lives. Our marriage was certainly happy, but with the diagnosis we started to wonder if we weren’t doing things for others, when instead we should be doing things for ourselves. Were we just following life’s plan as others imagined it should be? It seemed then (as it still does today) that it is more important for us, and more satisfying, and more adventurious to live the lives that we want to lead. I don’t think that when we made those decisions (nearly 4 years ago now) that we could have realized how rewarding this experience could be. Our marriage is stronger and happier, and we’re having fun and about to embark on our next great adventure!

So that’s where we are at now – we are preparing to uproot our lives again and move to Zurich, Switzerland. We’ll land on Dec 30 and celebrate a New Year in our new town. But with that being said, it’s time to do a Farewell Tour…

“Don’t be dismayed at good-byes. A farewell is necessary before you can meet again. And meeting again, after moments or lifetimes, is certain for those who are friends.” — Richard Bach

This is the Year….

Happy New Year from Zurich, Switzerland! I hope your 2013 was filled with much happiness and good health. And more importantly, that your 2014 will be even better.

Brian and I, along with our two cats, made the flight from Chicago to Zurich on Mon Dec 30, and landed on New Year’s Eve. We had grand plans to go out and ring in the new year down by the lake and experience the festivities and a 20 minute fireworks display, but by 9pm we were too jet-lagged to do anything further. Oh well, hopefully next year we’ll celebrate in real New Year’s fashion. With as good as 2013 was to me, I didn’t really need a reason to party – the whole year has been better than expected and ended with Brian and I starting our new adventure. Really – we couldn’t have jammed anymore excitement into 2013.

I’m not one for New Year’s Resolutions. I’ve had the opinion for a few years now that we shouldn’t wait until the new year to make changes in our lives. But with that being said, this year I am making a resolution. With all that’s going on these days, I want to make sure that I don’t lose sight of what’s important to me.

I want to ensure that I enjoy every minute. That I do not waste my time on the unnecessary.

That I notice my surroundings – enjoy every taste, smell, and sight.

Love the one I’m with. And love myself and my health.

This year is going to be a great year…. This year is going to be the year that we look back on in our old age and know that we did it. We made our dream a reality. We enjoyed every minute and made the most of every opportunity.

My goal for this site is to update it more regularly in 2014 with stories of our Swiss/European adventures. But recognizing that this is also a story about living with cancer, I will update it with my experiences of navigating the healthcare system here in Switzerland (as folks back home in the US may find this of interest), and share, in general, what it’s like here when it comes to doctors, medicines, and healthy lifestyles.

For more regular ramblings of my experience feel free to follow me on twitter @a_swisstory (please note, I will no longer tweet from @carcinoidstory as two twitter accounts is just too much!).

In closing, I hope that you’ll find good health, wealth and happiness in the coming year; and that you’ll live every moment with enthusiasm and joy!

“There is no security on this earth, there is only opportunity.”  – General Douglas MacArthur