Monday, December 28, 2009

One more medical update.....some good news!

Dear Friends and Family,

Today (written on December 20th) is exactly four months since I had a Whipple procedure to remove a neuroendocrine tumor on my pancreas. While I said I was done writing mass emails, I cannot help myself from reporting to all of you (my supporters) the great news that I received on Friday. Last Monday I endured an MRI - this was not really for diagnostic purposes, but was done to get a post-operative baseline. In any case, I got a call from the oncologist’s nurse telling me that my MRI was totally fine, and there was no need to come back in until August! I must say those words were music to my ears! After one entire year of endless tests, invasive procedures and doctors’ visits, I am looking forward to 2010 to just live and enjoy life.

For those of you who are my “Facebook Friends” much of what I am telling you is not new, but for those of you who have not yet ventured into FB-land, I’ll fill you in. A lot has happened in these past four months. As you know, I spent 23 days in the Stanford Hospital. During those 23 days, my son David left Berkeley to start his 2nd year at Brown, and my daughter began the college application process. As you also know from my friend Susan Meadow’s incredible email updates, my time spent in the hospital did not go so well. However, when I was finally given permission to go home to see how I would do, I got dramatically better day by day. It was truly a miracle! There was something about being in my own home, sleeping in my own bed, and pureeing my own food that slowly but surely brought me back to life. It was a long haul, but I did it, with the help of so many of you who brought food and gifts and sent good wishes via mail, email and phone. I honestly believe I would not be where I am today if it weren’t for the support I got from each and every one of you.

So, back to all the things that happened during the past four months….Gradually, I began to swim – little by little until I reached my pre-operative distance. After about 3 months, I was back to swimming 4000 yards at a time – not quite at the same speed that I was previously swimming, but I can now do flip turns again – so all in all, I’ve pretty much recovered most of what I lost. I’ve also returned to my exercise classes and getting personal training twice each week. I’m working on various projects and life seems to be pretty much back to normal. Also during this time, David trained for and ran the NY City Marathon on November 1st. Richard and I were there and were extremely proud (and somewhat emotional) parents as we watched him cross the finish line in Central Park. David finished 7th in his age-group (3 hours and 14 minutes) and ran with a sign on his back that said, “For my Mom”. I was so greatly touched.

During this time, Aly turned 17 and was busy beginning her senior year at Berkeley High and figuring out the college application process. Mind you, I was not much help to her at all in this endeavor. On her own, she figured it all out. She was recruited by several schools and narrowed down her choices to Williams, Amherst and Brown. While her brother was lobbying strongly for her to join him, Aly fell in love with Williams during a recruiting trip there and applied Early Decision. And….just last week, on Tuesday, she was accepted. Again, I’m quite proud of how (during this very difficult time in our lives) she managed to bring complete sanity to a process that appears to be completely insane! So, now both of my children will be living on the east coast. Clearly, I see many trips crossing the country for our family in the next few years – let’s just hope the rumors that airlines might be dropping their frequent flier programs are not true!

During these past four months my sense of time became totally altered. The 23 days in the hospital felt like an eternity, yet the 3 months since I have been out seem to have flown by. Having survived cancer for the 3rd time does weird stuff to one’s brain, psyche, and emotions (not to mention one’s body!). I am so grateful to be here and am still processing what it all means and how to put it all in perspective. Last month I celebrated my 54th birthday – and now I look forward to living a long and productive life, missing many body parts, but with renewed motivation to learn from what I’ve been through, and to hopefully provide inspiration to others who might face life challenges similar to mine.

I won’t bore you any longer with this email which is already much too long, but I do want to thank you one more time, from the bottom of my heart, for being my virtual and real community of supporters. To those of you struggling, particularly with cancer – you are in my thoughts and prayers every single day. I haven’t written in my blog for a while, but I am going to start up again in 2010. I will also be launching my Health and Wellness Matters website which I hope you will visit. Many of you have asked me for the Swim Across America website address, and if you can still donate to the 2009 swim - the answer is YES! and the website is listed below.

To each and every one of you, I wish you a very happy holiday season and a peaceful, safe, and healthy New Year. Thank you for everything.

Susan (not yet live, should be in about 2 weeks) (look for Team Susan Survives! or Richard or Aly Levine)

and of course “Just Keep Swimming”

Sunday, October 18, 2009

Letter of thanks to my virtual support system

Dear Readers of my Blog,
Following is a letter that I sent out to my family and friends last week, 8 weeks since my surgery. I’m posting it for all of you to read and would like to thank those of you following my blog, and for being out there and supporting me during my latest leg of my cancer journey.

Dear Friends and Family,

Tomorrow (Thursday, 11/15) will be exactly 8 weeks since my surgery. It’s hard to believe that I am on the other side of this ordeal, and I just want to tell you one last time how great it was having you all out there. Even if I haven’t heard a word from you, just having this big, long list of family members, friends and acquaintances was my lifeline and truly helped me get through it all. As you know, from my amazing friend Susan Meadows (those of you new to the list missed her updates), the surgery was big (6 ½ hours) and the recovery was grueling. For many days, I did not do well, and 23 days in the hospital felt like an eternity. So now, just 8 weeks later, I’m happy to tell you that I am doing well. My abdominal incision is healing (photo on my blog), I’m swimming (slowly, and have done up to 1 mile at once so far), walking, eating, and my body is doing what it’s supposed to be doing. For the most part, I feel OK. I am still very tired, at times, but I am back amongst the living, out of the hospital, and, once again, feeling incredibly grateful just to be here.

Beginning in December of 2008, when the doctors at UCSF suspected a tumor “someplace in my abdomen”, I lived with a tremendous amount of uncertainty. “Did I have cancer again or not?”, “Was I going to be OK or not?”, “How serious was this?”, and the list went on and on. It took 6 months to diagnose the tumor (a neuroendocrine pancreatic tumor which was slow growing). The diagnosis was confirmed in April. Then the uncertainty continued as we debated over whether or not it would be safe to go on our long-planned trip to Israel, which we did, and I’m so glad. Then we had to wait another 4 weeks for the surgery because the surgeon was on vacation. So, essentially, we lived with a dark cloud over our heads for about 9 months. And now, the uncertainty is gone, and it is all behind us. My prognosis is excellent, and the tumor is gone. No chemotherapy or radiation is needed. It has all been surreal, and I’m thrilled to report that I’m now on the other side of what felt like a nightmare. I’m making progress every day, and I can see that I’m approaching a “normal” life once again. We are even planning a trip to New York City at the end of this month to watch David (my son) run in the NYC Marathon!

And so, this will be my last email update. Thank you for putting up with the mass electronic messages, and for supporting me during the past few months. As I have said each time that I’ve written – THANK YOU FROM THE BOTTOM OF MY HEART – just for being there. Your encouragement and kindness through this have been humbling. Your cards (about 300), emails, visits, phone calls, meals (yummy soups and wonderful homemade baked things), books and books on tape, DVDs, quilts, jewelry, works of art, gift certificates, prayers, thoughts and donations have been overwhelming. I really don’t know how to adequately thank each and every one of you. I (and my family) am eternally grateful to all of you. I have great confidence in the power of friendship because of all of you. I only hope that in a time of need for any of you, I can be there for you as you have been for me. From now on, I will not send mass emails, but will be posting on my blog periodically, when, and if I have something to say. I was going to say that my journey has ended, but in many ways it has actually only just begun. I hopefully have a long road ahead of me, and I am proud and lucky to have all of you out there in my life. Once again, I have learned what’s important in life, and what is important is all of you.

I hope you are well, and to those of you who are not, you are in my prayers. I’m particularly sending healing wishes to Jen, Andrea, Tamara, Bob, Sandy, Thea, Deanne, Darci, Rhonda, Carolyn, Tim, Tom, Jill and Len. (I hope I’m not forgetting anyone!)

Thank you for everything,
Susan (my blog address –some new photos posted) (Team Susan Survives! raised over $58,000 and the total for the swim was over $200,000 – money raised goes to cancer research in the Bay Area.) (Just Keep Swimming)

Wednesday, October 14, 2009

Cards and gifts - thank you all so much!

How can I adequately say "THANK YOU" to all of you who sent cards, books, meals, gift certificates, and donations? Your generosity and support has been overwhelming.

Monday, October 12, 2009

8 weeks post-op

A picture tells a thousand words! Here it is folks. Eight weeks post-op (on Thursday, 10/15)and this is what the incision looks like - not too bad! Notice that it's in the shape of a wave, sort of! Can you believe I'm posting this for all the world to see? If any of you have been with me during the past few weeks, you know I'm not shy about showing off the wound from my battle with the surgeon! More photos and postings to follow. I'm just getting back to writing after a brief hiatus.

Monday, September 28, 2009

Yom Kippur - not fasting!

Today is Yom Kippur. A day of fasting, reflection, and asking for forgiveness. I, however, am not fasting, although will eat lightly. I figure, I fasted for 23 days (more or less) during my stay in the hospital. I also had a lot of time for reflection, and did a lot of asking for forgiveness. I figured I must have done something wrong to have landed in the situation I was in. I know that is crazy, but given the number of hours I lied awake in the nights, this did cross my mind. So, anyway, on this quite and solemn day, I am reflecting a lot. Mostly, I am feeling incredibly GRATEFUL - to each and everyone of you receiving this email. I cannot tell you how much you have helped me get through these past 6 weeks. This internet thing is amazing. As I have said before, the outpouring of love and support overwhelms me. How can I thank you all enough? For everything. Thank you especially for the donations you have made in my honor to Swim Across America. Team Susan Survives! has raised over $40,000 so far - isn't that unbelievable?

To those of you observing this day, may it be a good day for you in all ways, and if you are fasting, may you have an easy fast. And, may all of us (Jewish or not) be "inscribed in the Book of Life".


Wednesday, September 23, 2009

Getting Stronger

There seems to be a disconnect between my brain and my body. Nothing happened to my brain 5 weeks ago (except for a ridiculous amount of morphine getting to it, but once that went away, my brain was, once again, fully functioning). But a lot happened to my body. Six and a half hours of surgery, many tubes, drains, fed intravenously, a huge incision across my abdomen, rewiring of my entire digestive system, unable to do the simplest bodily functions, a lot of vomiting, 23 days in bed with a few walks here and there, and the list goes on. But these days, when I awake, drug-free, my brain goes into full gear. I think of the million things I need to do, and then I stop. Wait! My body is healing. I'm not going to do 1 or 2 of those things, let alone a million. My body needs to rest and my brain needs to learn that. This is the hardest thing about surgery. Learning to slow down so your body can heal fully.

But I am getting stronger every day. Today I swam 300 meters - in the warm pool at the Claremont (I never swim in that pool unless the cold pool is closed). It was wonderful. As difficult as it was, it felt heavenly. Much better than on Saturday, when I felt totally demoralized. I felt as if I could have swum more, but I heard all of the voices in my head, telling me "don't over do it". Everyone seems to be telling me that. The truth of the matter is that no one knows what "overdoing it" even is. My surgeon told me I could do anything except sit-ups! Duh!

I'm off to bed. I look forward to going to sleep every night because I know I will wake up a little bit stronger the next day. I have a lot to look forward to.

Saturday, September 19, 2009

Four laps!

Today - one month and 2 days after my Whipple surgery - I did it. I was nervous and scared - but I did it. I got into that pool - thought I would just jump in and be like my pre-surgery old self - OMG - was I wrong! I will say that it felt GREAT to be in the water - but when I started to swim I felt like a little old lady - my body failed me - it would not stretch out the way I wanted it to. I swam 2 laps - Richard was waiting for me at the end of the pool and I burst into tears. (For those of you who remember, this is exactly what happened to me when I tried to swim after my lung surgery - only Richard tells me that it was even worse then, because I couldn't breathe or stretch!) This time, the breathing was no problem.

After my 2 laps, I put on a pair of fins and swam 2 more for a grand total of 4 laps! I should feel good about this, but for some reason, I'm a bit demoralized.

So, here I am. Not sure when or if I'll try again so quickly - but I wanted to share my first swim with all of you. I've got a long way to go, but I'll get there.


Saturday, September 12, 2009

Out of the hospital!

Good news! I'm out of there! I could not have lasted one more minute. I'm not great, and still feel nauseated, and all systems are not functioning 100% - but who cares? I'm home, and it feels wonderful to be here with Aly, Richard and Daisy. (Of course, I'm missing David!) If I went from the bed to the chair, from the chair to the bed, then strolled around the hospital corridor one more time, I think it would have been over for me. Now, I can go from my bedroom, to the kitchen, to the living room, to the family room and do it all over again. It's the simplest things in life! Thank you all for following my blog. More in a few days when I have some more strength.

Thursday, September 10, 2009

09-09-09 - a lucky day!

Today is three weeks since my Whipple. Have any of you looked up just exactly what this operation entails? It is rather extraordinary. I can't believe I actually had this done to me. Although, given the way I feel now, I believe it.

But, today is a better day. Actually, yesterday, 09-09-09 was the day - my NG tube came out - for the 4th time, but I think this time it is for good. They still aren't letting me eat yet, but I know that is the next step. Once I can eat, (and, of course, poop), I think I might actually be released. I feel like I have been here forever. You may all be asking, "What have you done for the past 3 weeks"? OK, this is a good exercise for my brain. Hmmmm, what have I done during my stay at Stanford University Hospital? Well, let's see:

  • I've spent many hours feeling very sorry for myself
  • I've counted my blessings
  • I've watched a ton of really stupid TV and a million infomercials
  • I've appreciated (so much), visits, cards, emails, phone calls and gifts
  • I've met about one hundred nurses
  • I've gotten about 8 accupuncture treatments
  • I've had a massage just about every day
  • I've had two sessions with ancient Tibetan "singing bowls" (amazing!)
  • I've had a Jin Shin Jitsui treatment
  • I've had a ton of foot reflexology
  • Richard, and my wonderful friend Susan Meadows have spent hours sitting with me here in my lovely room
  • I've heard from so many old, old friends on Facebook (many of whom have been incredibly generous by donating to my swim:
  • I've watched hours of programming on the FoodNetwork because the doctors told me that if my brain got stimulated by food it might inspire my gut to start out, I just might become a gourmet cook after this!
OK - that's all the psychic energy I can muster up for this blog. More will follow - with photos, I promise. I'm doing better, hour by hour, day by day. There is a light at the end of this long, dark tunnel. Thank you for reading my blog and for your interest in my cancer journey.

Wednesday, September 2, 2009

12 Days Post surgery

While things seemed to be going smoothly in the beginning, it seems that my recovery took a turn for the worse a few days ago. When they took out the NG tube initially, I did OK, and then proceeded to throw up continuously. I have since had 2 more NG tubes inserted (yes, while awake), and I'm not healing according to plan. It looks like I'll be in here at least until the weekend. I have so much to write about, but so little energy to work with. I know I'll get well soon and will out of this hospital with a renewed optimism about my health and recovery. To be continued soon.

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.

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 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.

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:

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: 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:


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.