Writing theoretical and informative bits about mammograms and types of cancer isn't going to cut it for me forever I suppose. At some point I have to tell you how I'm doing.
Back to the Oncologists' Numbers
I had no idea until I saw her computer analysis in early February that if I lived another 10 years (19% of women in my situation won't) I'd have abut a 50/50 chance of having a cancer recurrence within that time period. In short - I feel that my surgeon misled me at best and through the oncologist I got the real picture.
Terrified and shocked, when I saw those numbers, I decided I'd up my chances any way I could, including chemotherapy.
As February turned to March and the 60 day after
surgery mark passed, I expected to keep feeling better. I didn't. I was
becoming more and more exhausted with the slightest activity. Chemo hadn't started because I needed more tests and a neurologist's clearance. And that was a good thing, because I had made a decision based on fear, without thinking it through.
For the chance to add 7% to my chance of being cancer free in 10 years I was opting to make myself deathly ill, adding more pain and exhaustion to that which Fibromyalgia syndrome already gifted me with.
As I felt worse and worse over the next month, voluntarily lowering my quality of life in order to possibly increase longevity seemed like a really dumb thing to do.
In March, Cancer exhaustion had set in.
I could actually understand how some patients opt not to have treatments that will prolong or save their lives because they are just too exhausted to proceed.
At this point, too exhausted to go for my weekly reconstructive surgery appointments, there was no way I was ready to start any other kind of therapy at all, especially chemotherapy. And why call my family practitioner to ask for her input? It seemed hopeless.
Enter the K-Dawgs
At this point #2 daughter, 
Kerry, had apparently had it. Nine months pregnant, she was not willing to let me curl up and give up. She lobbied for something - anything - to treat the pain and fatigue, including acupuncture with which she had personal experience, and massage which Isabella Morri had been evangelizing with me from the other side of the continent.
Kerry made an appointment with an Acupuncturist with a Masters Degree, Virginia Mitchell who promptly had a fit about my energy level. She set about rebuilding, and guiding me to conserve. Daughter #3, Kate, jumped on the bandwagon, becoming chauffeur to twice weekly appointments and manager of the master schedule.
At the same time, project YUMM materialized out of thin air. No longer was I getting away with going for hours without eating. 
Kate shopped for and prepared little plates of goodness nobody - including me - could push away.
Melon, blueberries, healthy cereal, yummy cheese, vegetables, tuna macaroni and other salads, proteins of all sort - it was always attractive, served in manageable portions, creative and well balanced.
She's kept at it, and when I eat what Kate cooks I do feel a little better than when she gave in to my constant suggestions to just order pizza.
It's been less than a month since the girls really inserted themselves into my unrealistic and unworkable plans. Today the status is:
- Continued acupuncture has made a difference in my outlook and pain level.
- Chemotherapy is not something I'm considering but I am researching another option with better results for my type of cancer: hormone therapy (tamoxifen or amnidex/arimidex or both) for a period of five years.
- I've gone back to George Washington University Hospital to continue visits to rebuild my right breast. A second surgery should be possible by the end of May.
- After a long sobfest with my internist I've gotten feedback about unrealistic expectations for recovery and have a second referral to Georgetown's Lombardi Center for a team approach to a complex case of cancer, exhaustion, complications fibromyalgia throws in the mix and who knows what else.
- I'm focusing less on work for the frozen pea fund, making sure I responded to everyone who wants a part of me, etc. and more on conserving energy and focusing that energy inward.
- After talking with numerous professionals I'm persuing prophylactic mastectomy of my left breast.
- To defray some expenses I'll limit myself to very few consulting jobs(1) and creation of wearable / frame-able art construction pieces
- And perhaps most importantly I have accepted that unlike what my surgeon claimed would be the case after my breast was removed, I'm very ill and may be for some time. The proof of the pudding is the handicapped parking hang-tag I've resisted but now have given in to.
- I'll be doing very little for the remainder of the year, limiting myself to physical appearances for the Frozen Pea Fund and the Seacoast Concert for A Cure
It's just got to be upwards from here, as we look forward to a new granddaughter in our lives, and a warm summer filled with sunny days. It helps to believe that.
Besides the support of my family, the response from the internet community have been just amazing. I know that readers probably think that if they send a card, or a bookmark or a package of brownies, a CD or a book it gets lost in the flood of mail. But it's really not that way at all. If you have a friend who is ill please know that they will be absolutely energized every time a piece of mail arrives.
You should know that if you have a friend in your life who has a serious illness and you're a few months out from diagnosis, the flood to the snail mail box has dwindled to a trickle. If there's anything I can pass on that would help you help someone else it's probably to encourage you to continue sending special teabags, or bath bombs, great smelling body oil, a book or magazine you enjoyed (yes - even a used magazine!) or a picture that your kids drew. I promise - it means a lot and will continue to, I assure you.
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(1) What kind of consulting?
a.I'm guiding clients in selecting suitable Second Life names, creating non-newbie avatars and providing suggested activities for those new to Second Life who would like to experience a few business and social functions which will enhance their physical life business or life
b.I'm helping people build their online image including their twitter following, and helping them to use pownce, eventful, twitter, facebook and other social media to raise their profile and / or that of their businesses
I'm glad to know you (and your daughters) are pursuing so many avenues to improve your situation. It's all too easy to try a thing or two, get frustrated, and give up. Don't give up!
Your focus is in the right place. There are plenty of folks who would gladly use up your time and energy for you, because everybody likes to tap someone who's capable and kind. But you can't help others without taking care of yourself. Randy Pausch (the prof. of "The Last Lecture") says that he's using the flight attendant's rule - secure your own mask first - as he battles pancreatic cancer and continues to be dad to three little kids. If he doesn't take care of himself first, he *can't* be there for them.
So, secure your own mask first! And never hesitate to call on your online buddies for help and comfort.
Posted by: Tim (@Twalk) Walker | Apr 12, 2008 at 12:02 AM
susan, thank you for being so frank and open, by sharing your story, and what works and what doesn't.
i was particularly touched by what you said about giving in to the exhaustion. a close friend of mine did that a few years ago. i'm not critical of it - but of course it would have been nice to still have her around ...
so i'm glad you have a plan, so that we can continue enjoying you (what did someone call you the other day? the nana of social media?)
let's keep going. we're all in this humanity boat together.
Posted by: isabella mori | Apr 12, 2008 at 01:45 AM
Oh, Susan! Geezus, I had no idea you were that ill. I do, however, know that surgeons sell surgery, and that it has taken me two years to recover from my hip replacement, although I was up and out in three days. There is a huge mental component in all of this, not to mention insults to the body. I imagine it is easy to imagine giving up.
Good thing your daughters are there. Although we online people are cool, we are not there to bring you food. You need all the help you can get.
Posted by: francine hardaway | Apr 12, 2008 at 05:42 PM
I'm happy that you're pursuing alternative paths and that you're family is so adamant in helping you to recover. You're such a giving person, it's important that you give to yourself. Congratulations on all the avenues of creativity that are developing out of such a negative situation. It's inspirational!
Posted by: angela penny | Apr 12, 2008 at 06:02 PM
Susan,. I'm so glad you're concentrating on you and not satisfying the masses. As you have learned and others have confirmed, those who are giving, kind and intelligent are often drained of their resources - physical, emotional, mental and spiritual - by those who are far less capable in their own minds or just plain lazy - take your pick. You have every right and obligation to YOU to take care of YOU and not the others. I'm grateful for the K-Dawgs and their obvious joy at helping you take care of you. It is IMPERATIVE you do so.
My best friend was diagnosed at 29 with Breast Cancer and decided to be very very aggressive. She, having never had children and wanting them, immediately went on Tomoxifen to shut down her ovaries and protect her eggs. She then went through the surgery to remove her breast and reconstruct it right away. Being a small breasted woman, it was easy to match size. Afterward, she did go through 6 months of chemotherapy and was very exhausted, tired, worn out, emotionally, physically and yes, spiritually too. Throughout her chemo, prayer made her stronger, helped her fight harder. Each report from the doctor gave her a reason to have faith and believe in her own healing, no matter if it was a good, bad or middle of the road report.
I'm happy to report, she is 12 years cancer free and 4 years ago gave birth to a beautiful little girl.
God bless you Susan! This too is a win-able fight. I know the pain the Fibro is giving you, but keep up the good fight! You can do this! I have prayers and faith in you, for you and with you.
Many blessings,
Lissa
Posted by: Lissa | Apr 13, 2008 at 12:11 AM
Thank you for sharing your story. I also follow you on twitter (DDeeps).
Posted by: Deepa | Apr 19, 2008 at 12:32 AM