Monday, December 28, 2009
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.
www.healthandwellnessmatters.com (not yet live, should be in about 2 weeks)
www.swimacrossamerica.org (look for Team Susan Survives! or Richard or Aly Levine)
and of course “Just Keep Swimming” http://www.youtube.com/watch?v=CmyUkm2qlhA
Sunday, October 18, 2009
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,
http://www.susanhelmrich.blogspot.com/ (my blog address –some new photos posted)
www.swimacrossamerica.org/teamsusansurvives (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.)
http://www.youtube.com/watch?v=CmyUkm2qlhA (Just Keep Swimming)
Wednesday, October 14, 2009
Monday, October 12, 2009
Monday, September 28, 2009
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
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
Saturday, September 12, 2009
Thursday, September 10, 2009
- 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: www.swimacrossamerica.org/teamsusansurvivies
- 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 working.....watch out, I just might become a gourmet cook after this!
Wednesday, September 2, 2009
Tuesday, August 25, 2009
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.
Monday, August 17, 2009
- 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
Wednesday, August 12, 2009
Sunday, August 9, 2009
Friday, August 7, 2009
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
(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