Tuesday, August 25, 2009

Six Days Post Surgery

I cannot believe that my surgery was 6 days ago. Today is Wednesday, August 26th and it is 11:00 AM. I've been up since about 4 AM. Several things woke me this morning.....mostly it seems that some of my drains were leaking. my machines were beeping like crazy, and the nurse came in to take my vitals - all at the same time. Needless to say, I could not get back to sleep. I haven't written since the day before the operation and there is so much I have to catch up on.

Thursday, August 20th: Richard, Aly and I woke up at 5:15 AM. I tried to persuade David to join us, but was unsuccessful. But the 3 of us went to the pool and arrived at the Claremont before the doors opened at 5:45. The amazing thing was how many people were there - it was so wonderful. I felt so supported and loved by a community of people that have truly become my "early morning friends". Even people who don't normally come at that hour showed up! Thank you Charlotte and Frances for the beautiful flowers (and for getting up so early!).

Anyway, I had a great swim. Short (1000 yds), but perfect. I felt strong in the water and swam at a nice, steady pace (thank you Michael!). Then, I took a quick steam and what was going to be my last shower for a long time! We headed to Palo Alto, and got to the hospital right on time, around 7:50 AM. While there is so much I could write about that morning, all I'm going to say is that the surgery was much bigger than expected. It took 5 1/2 hours and I had the big "Whipple Procedure". They took out my gall bladder, my duodenum, and the head of the pancreas. The incision goes across the mid-line of my chest from one side to the other. All I can tell is that it is HUGE! Not sure if I'll ever wear a 2-piece bathing suit again, but really, who cares? I'm here! If I get brave, perhaps I'll post a photo, but for now, let's just say, it's not at all what I had expected, and it makes me very sad. But, hey, I'm alive, and I'm going to be OK.

I'm not going to include all of the details about the surgery and recovery, but here are just a few:
I was in the Intensive Care Unit (ICU) until Friday night and was them moved to a private room on the 3rd floor.

I must have had 100 wires, drains, and tubes coming out of my body - including an NG tube (naso-gastric) which went up my nose and down my esophagus draining out my stomach - I'm not sure which hurt me more, that tube or the incision - but it was awful - that tube came out on Monday, and I've never felt so happy!

I took my first walk on Saturday morning and I think I walked about 25 times around the corridor.

I developed a severe allergic reaction to something (?) and my body was covered with hives from head toe.

I've received so many lovely messages, and I want to thank you for your kindness and support - it has really been incredible.

Today, the epidural (direct pain block) came out, and I had my hair washed! I'm planning on going outside, and supposedly I'm going to be getting some clear liquids. The doctors say that I'm doing great. I'm trying my best to take things S-L-O-W-L-Y. One step at a time, minute by minute, day by day, be patient, have patience. For those of you who know me, this is very difficult for me. Things that I thought had to be done yesterday, will just have to wait. There are lessons in this for all of us I know, but right now, it is my turn to learn from it.

All I can say is that I'm grateful to have you out there, and if anyone is reading this, thank you for supporting me in my journey.

Monday, August 17, 2009

Thanks for the advice....but I think I'll just swim!

One thing I've learned from having cancer is that people are extremely generous with advice. It seems that many people seem to know what might be best for me, during this time, and they feel very comfortable telling me exactly what I should or should not do. So far, some of the suggestions (now, let's see, would I actually call them suggestions or something a bit stronger?) are as follows:

  • you should go to Germany where they induce very high fevers in people with cancer and the fever just burns the tumor right away
  • you should become a Buddhist
  • you should do TM (Transcendental Meditation) or just plain meditate
  • you should change your diet
  • exercise more
  • exercise less
  • drink red wine
  • don't drink any alcohol
  • stop drinking coffee
  • gain weight
  • eat a lot of ice cream
  • eat tumeric (it's good for the pancreas)
  • blog (what a great idea!)
  • be positive (as if I'm not, or if being negative brought this on!)
  • breathe (good one!)
  • you should do acupuncture, do yoga, do Pilates
  • you should get your energy released
  • you should see a homeopath/an Ayurvedic doctor
  • you should do guided imagery, listen to relaxation tapes, do hypnotherapy, be in psychotherapy
  • get massages frequently

So, many of these do's and don'ts were and are excellent recommendations. I did actually take a lot of the advice I was given. For example, I did have my energy released, had several massages, did yoga, saw an Ayurvedic oncologist, exercised more, tried to gain weight, but I did not go to Germany. Each one of these recommendations, mind you, takes A LOT of time, and also costs A LOT of money.

I could have spent hours and hours, and thousands of dollars following everyone's suggestions.....but instead, I just swam A LOT. You see, swimming for me is all of the following:

  • it is therapeutic
  • it is hypnotic
  • it is medatitive
  • it's positive!
  • it allows me to breathe rhythmically
  • it stretches me out
  • it makes me feel strong
  • it puts me in "the zone"
  • it allows me to do guided imagery
  • being surrounded by water makes me feel amazing
  • it's healing
  • it's restorative
  • swimming is magical

So, for all you swimmers reading this blog, I know you get it. For all you non-swimmers, I'm sorry if you don't understand what I'm talking about, and maybe you should give it a try. Swimming has gotten me through many difficult times in my life, particularly these past few months. I'm going to swim on Thursday morning at 5:45 AM - just a short swim before heading down to Palo Alto for my surgery which will be at 10 AM. We don't know how long I'll be out of the water, but however long it will be, it will be much too long for me. I'm going to miss the magic of swimming. But, hey, if you have any other advice for me you can always post it on the comment section of my blog.

Happy Swimming. http://www.youtube.com/watch?v=CmyUkm2qlhA

Sunday, August 16, 2009

Pampering for Surgery!

Last week was a very busy one for me. So much to do before my life comes to a screeching halt for a while. This is not how I want to live, or what I'm used to. My days are usually full to the brim. Up at 5:45 A.M. to swim, followed by a million things. Swim Across America stuff, Berkeley High Development Group stuff, Wellness Coaching, meetings, coffee/lunch with friends, twice-a-week personal training and exercise class, sometimes a yoga class (when I can fit it in), grocery shopping, etc. etc. We all know what it is like. I generally pack so much into any given day that it's frightening. But now, I'm going to be forced to lie in bed, and have my physical activity reduced to taking small walks around a hospital corridor. I've been here before, and I absolutely hate it. I hate lying in bed, I hate being sick. It does not suit me well.

I'm trying to think about how nice it will be to be able to catch up on all the books I've been wanting to read. I just got a brand new MacBook Pro and iPod Touch, and I need to learn how to use them, I will have lots of visitors (which will be fun), but I am dreading the life that I will be forced to live for the next few weeks. (Notice how optimistic I am being, I'm thinking just a few weeks?) But, how does one prepare for surgery? Grooming, of course.

Last week - I had a facial, got my haircut and got a manicure and pedicure. I rarely pamper myself so - but it all needed to get done, and everyone knows you gotta look good when you are on the operating table, right? Here I am - getting pampered. That's my wonderful friend, Susan Meadows with me - she has been a life saver to me. Thank you Susan - I love you.

Wednesday, August 12, 2009

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.

Sunday, August 9, 2009

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.

Friday, August 7, 2009

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.

Thursday, August 6, 2009

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


Tuesday, August 4, 2009

Please support my team in Swim Across America.

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.