My normal - living with uncertainty

We all live with some uncertainty. None of us know what tomorrow will bring. Recent studies have shown that it is "uncertainty" that makes us anxious and depressed. Uncertainty, for example, about the economy, the stock market, job security, etc., is really what gets to us. Having a plan and knowledge about the future is what can calm us down.

For the past 9 months, I have been living with "known uncertainty". Starting in December of 2008, doctors at UCSF Medical Center suspected that I had a tumor somewhere in my abdomen. They thought, maybe stomach, liver, and possibly, but unlikely, in my pancreas. I was sure they were wrong. I felt fine, looked OK, was swimming fast, my energy was good....how could I possibly have a tumor, particularly where they were looking?

Since the days of my first scan on December 9 & 10, I have undergone 9 procedures. I went to sleep every night wondering if there was even an outside chance that they might be right. My oncologist at UCSF, basically said to me, "I believe you have cancer until I can prove that you don't". My response to her was, "I believe I don't have cancer until you can prove that I do". I suppose that was some variation of "seeing the glass half-full or half-empty, no?

Following the first set of scans in December, each subsequent test turned up negative, except for that very first one that nagged at the oncologist and the UCSF Tumor Board. A repeat of the December scan in April(called an octreotide scan) turned our uncertainty into certainty, kind of. We were now, certain that there was, in fact, a tumor in my abdomen. But then, the uncertainty began again. Where was the tumor? What was the tumor? More questions, more uncertainty.

In April, it was determined that their suspicion was correct. I had a neuroendocrine pancreatic tumor. As I have explained earlier, this is not typical pancreatic cancer - this is good. This is a rare tumor (same thing that Steve Jobs had) - that will, most likely, not kill me.

The plan is for my surgeon at Stanford University Medical Center (Steven Jobs' surgeon) to "enucleate" the tumor - this means he will just remove the tumor and preserve my other body parts. He is going to try his best to NOT preform a "Whipple Procedure", even though I have signed a waiver that this is a possibility. More uncertainty.

So, my "normal" has been that I have been living with a great deal of uncertainty for the past 9 months. First, wondering why I was having so many tests, and thinking for sure that I was absolutely fine. Then in April (on the 20th, to be exact), I received a phone call - from my oncologist's nurse - on my cell phone, while driving - informing me that I had cancer. Now, how is that for receiving some bad news? Then we had to figure out what the treatment would be. Surgery. Where would the surgery be? New York, Boston, SF, LA, or Palo Alto? Who would the surgeon be....and on and on.

I'm actually do OK. Better than would be expected for someone living with so much uncertainty. The nights are the toughest. Keeping busy all day is great. Richard, and my family and friends have gotten me through this (as if they aren't living with a certain amount of uncertainty themselves!). My surgery is one week from today, on August 20th. This will be the toughest week, but I'll get through it. I can't wait for it to be over. Getting it over with has to be better than the uncertainty that I've been living with for the past 9 months.

Beautiful gifts received...

The gifts I've been receiving are amazing. I am struck by the generosity of people....and the artistic talent! I am so touched that people are taking the time to actually make and create magnificent pieces of art and to purchase items that are so meaningful to me. As you can see from the photos above, there is a theme here - water and swimming, primarily. Although, there have been countless other little artifacts and many "good luck charms" that will be with me during these next few weeks. Thank you to each and everyone of you. I am so blessed and feel incredibly honored to be your friend.

We did it!

Richard and I drove up to Donner Lake on Friday evening, arriving at the Inn at Truckee at about 10 PM. We had a great drive up and even brought Daisy (our adorable dog) along, who, for a mere $15 extra could stay with us! This was her first time at a motel, and I must say, she loved being on vacation with us! We set the alarm for 6:45 AM, had a good night's sleep, and woke up ready for our 2.7 mile swim across Donner Lake. As you can see from the photo above - the weather, well, shall we say, was not what we were expecting or hoping for. I had heard that the beauty of this particular swim was the beautiful scenary. The gorgous mountains. What mountains, what lake?? We could not see a foot in front of us. The race directors, to their credit, postponed the start of the swim by about 1/2 an hour. This was perfect, because by about 9:00, the fog lifted and there was the lake and the beautiful mountains. The temperature of the water was about 66 degrees, and the air temperature was about 55 degrees.

The race began. Richard and I stayed together for about 2 minutes. Then I lost him, and I actually had a wonderful swim, alone. I loved it. I was toasty in my wetsuit, was trying to enjoy the beauty, and really wasn't "racing" by any means. I thought of it as merely a long swim after just jumping in; a metaphor for what was about to happen to me next week. A a long recovery after just jumping in to surgery. So, the swim, it turns out, was much easier than I thought it was going to be. It went rather quickly, I thought. I finished in 1 hour and 18 minutes. I was 15th overall in the "wetsuit division", although most swimmers did not wear wetsuits (I cannot imagine how they did that!). Richard followed not too far behind me at 1 hour and 27 minutes, which was an excellent time for him - I was very proud of him.

Now, Richard, was absolutely freezing after the swim. He wore a sleeveless wetsuit, which I think was the problem. He could not stop shaking, and could not get warm. We make it back to the Inn, took long hot showers, and went out for a fabulous breakfast in Truckee. We felt good about our accomplishments. The interesting part was the analogy between the swim and my cancer. I was much more worried about the swim - the cold, the altitude and the distance, than Richard was - and it turned out to be much easier for me than I thought it would be. Richard, however, was less worried, and is always, the eternal optimist and the king of denial. Everything will be OK (and it usually is). However, Richard found the swim a bit more difficult than he thought it would be. It was longer and much colder than he anticipated. So, maybe, what lies ahead of us, will turn out to be a little bit easier than I am expecting, and a little bit harder than Richard thinks it is going to be. But in the end, it's going to be just fine.

We made it though the swim and we are both OK. We will make it through the surgery, and we are going to be more than OK. That is my greatest wish.

Preparing for the race....and other things

Tonight Richard and I will drive to Donner Lake (near Lake Tahoe), where we will compete in a 2.7 mile swim tomorrow morning at 8:30. Given the altitude, the cold water, and the distance, I'm hoping to complete the swim in just under 1.5 hours; Richard is hoping for about 1 hour 45 minutes. We will, of course, report back to you either on Saturday or Sunday, to let you know how we did!

How does one prepare for a swim like this? I think I've done all the work. I've been swimming consistently just about every day for years. Two plus miles daily is really nothing for me. Physically, I'm there - this is totally a mental thing. Which brings me to the preparation for my surgery, which will be in less than 2 weeks from today. Am I prepared? Physically, yes. The doctors all say that I am a "perfect surgical candidate" - how nice. I'm fit and healthy (except for the minor fact that I have cancer - a rare tumor on my pancreas). They say, I'm easy to "cut" into, because I don't have layers and layers of fat to cut through, and that I generally heal well. But still, I'm scared - similar to my fear of tomorrow's race. I suppose, the race tomorrow will be good practice for the surgery on the 20th.

Questions and answers.......

Following is a copy of an email that I sent out to many people. Some of you reading this may have already received it. Here it is again, for some of you just learning about my cancer.

(written on Tuesday, August 4th)
I'm writing this update to you today on the 32nd anniversary of my first cancer surgery. Who could have ever imagined then, at the age of 21, that I'd be lucky enough to be writing to so many wonderful people, and having the opportunity to say "thank you for having touched my life is some special way" 32 years later? So, thank you to each and everyone of you receiving this email. Also, who could have imagined that 32 years ago, I would be going through a very similar journey today? Now, at the age of 53, I'm dealing with cancer for the 3rd time. This time around, I am so lucky to have my husband Richard, my fabulous kids, my parents and brother, and so many wonderful friends and family members here in Berkeley, CA and all over the country. What did we do 32 years ago? There was no email or Facebook (or blogs, like this) - how the heck did we all communicate? Anyway, I'm writing to bring you all up-to-date. The question and answer format seemed to work well the last time, so I will do it again today.

How are you feeling? Pretty good - but much more anxious than I have been. Now the reality has hit and my surgery is in 2 weeks and 2 days - but who's counting?

How was Israel? FANTASTIC! Truly the trip of a lifetime. Richard and I had the best time together - almost 3 weeks of traveling, hiking, sight-seeing, swimming, meeting family, watching David compete in the Maccabiah Games - it was life-altering!

How did David do? Great! He got a bronze medal in the Sprint Triathlon (18-19 age-group) and 17th overall in the 1/2 marathon! Very impressive!

Did Aly come with you? No - she is in Alaska doing a NOLS course (National Outdoor Leadership School), and comes home on the night of August 18th.

When is your surgery? August 20th. (See question above. The surgeon had changed the date to the 18th and I decided to wait so I could spend a day with Aly.)

What can I do? There will be a website set up with a calendar for visiting and meals. This will probably go up in a few days. My friend Susan will be sending it out.

Or you could: Support my team, Team Susan Survives, a team of more than 20 people who will be swimming in the SF Bay Area Swim Across America event on October 3rd (not me this year) - this event raises money for cancer research programs in the Bay Area. https://www.swimacrossamerica.org/teamsusansurvives

For those of you in Kingston - help Edna and Bill through this ordeal!!

Do you want visitors? Yes, absolutely! Again, check the website so everyone doesn't come on the same day! You can also send mail to me at: Stanford Hospital & Clinics
ATTN: Susan Helmrich
300 Pasteur DriveStanford, CA 94305
Driving Directions: http://stanfordhospital.org/directions/

What are you doing to prepare? On Saturday, Richard and I will be swimming in a 2.7 mile race at Donner Lake, near Lake Tahoe. This is a crazy and very difficult swim because it is in cold water (we'll be wearing wetsuits), a very long distance and at altitude - but hey, this can't be any more difficult than what will be happening to me on the 20th. The swim is going to be easy in comparison! Also, in the next two weeks, before my surgery, I'll be seeing friends and trying to eat as much healthy food as I possibly can.

Do you have a blog? Yes, actually, I do. However, there is nothing written on it yet. But there will be, and here is the link: http://susanhelmrich.blogspot.com/ I think that's about it for now.

Thank you all so much for your calls, emails, and gifts. The support you have given me so far has been amazing. Please understand how difficult it is for me to answer your emails and calls - I just cannot possibly keep up - but do know, I appreciate all of it. So, again, really, all I'm hoping for at this point is that you send good thoughts and prayers my way. While your at it, I have two dear friends, Jennifer and Andrea, who are also on this cancer journey, and please put them on your list as well. Prayers (or whatever you may call them) can be very powerful.

Until the next posting or if you go to my blog, be well. And, one more thing, of course: http://www.youtube.com/watch?v=CmyUkm2qlhA

Love,Susan

Please support my team in Swim Across America.
www.swimacrossamerica.org/teamsusansurvives

32 years since my first cancer surgery

Today is an anniversary. David (my son) said, "it's not a happy anniversary, is it"? I actually think it is a happy anniversary. Thirty-two years ago I would have never imagined that my life would have turned out so well: a great husband and marriage, 2 beautiful kids, and a wonderful home. Cancer was very scary back then, as it is today. But back then, I never imagined that I would make it this far - and here I am - so, yes, it's a happy anniversary. And now, 32 years later, I'm having to face cancer again. This is my 3rd bout. This one feels scary, but I'm going to be OK. I have a neuroendocrine pancreatic tumor - a not-so-bad-tumor in a pretty awful place. The surgeon at Stanford (same guy that operated on Steve Jobs) is confident that he will be able to get the tumor and spare my parts - pancreas, gall bladder, duodenum, etc. Let's hope and pray for that. The surgery will be on August 20th - should last about 3 hours and I will be in the hospital anywhere from 10 days to 4 weeks. Oy! How will I do this again? Anyway, this is my first real posting (the youtube posting of Just Keep Swimming doesn't really count), and I will write more tomorrow. I'm just getting started. At first I thought I would have nothing to write about, but as I think about it, I think I'll have a lot to say. Ciao.