Sunday, April 5, 2020

The Yin and Yang of Life



A starting definition: Yin / Yang : Two halves that together complete wholeness. Yin and yang are also the starting point for change. When something is whole, by definition it is unchanging and complete. So when you split something into two halves – yin / yang, it upsets the equilibrium of wholeness. This starts both halves chasing after each other as they seek a new balance with each other.

My life is one big adventure.  Here are my suggestions.
­čö╣If your life is not an adventure, make it so. Say yes more. Its to easy to say no and easy to be complacent.  Learn and do.
­čö╣Invest in people.  The ones you love and the ones you just meet. They will always surprise you. (Good and bad but you cant have one without the other!)
­čö╣Live your life now because its the only one you will get and another day is not promised.
I found out on Wednesday, that I have cancer.  Specifically extraskeletal mixoid chondrosarcoma of the left index finger. Apparently it is a rare cancer, usually effecting men, and extremely rare on the hand. The good news, Yin, is that the scan of my lungs was clear so it appears it hasn't spread. The bad news, Yang, is that this slow growing type of cancer doesn't respond to Chemo or Radiation treatment, so the top 1/2 of my finger will need to be amputated. 

I had a pea sized lump on the top of my left index finger for about 6 years (I combed old photos to determine the year). Originally I was told it looked like a bone spur and more recently a benign ganglion cyst. It was suggested that if it didn't bother me I should just leave it as it sometimes comes back after it's removed anyway. I lived with it but recently decided out of pure vanity that I wanted it removed. After trying to aspirate the cyst they decided it was more likely a fibrous cyst and it needed to be removed surgically.  The doctor told me not to worry because cancer of the hand is exceedingly rare but as a matter of routine they would send the cyst for testing.  I didn't worry, but when I went to get my stitches out, I got the bad news. 1. I have cancer and 2. It's not treatable with drugs so I have to have an amputation.  Thank goodness I was able to get a chest scan right then and there.  My doctor made sure to have the results asap and called me that evening. It was the longest 5 hours of my life. It's a very odd feeling when the best case scenario is to lose your finger and the worse is that a non treatable cancer has spread to your lungs and the prognosis is 5ish years.

I feel like I should be more upset than I am about it. I definitely have ups and downs and had lots of tears, but generally I just feel thankful that they caught it before it spread and that my prognosis is really good!  It will be a threat for at least 10 yrs, but I will be scanned every 3 months for 2 years, every 6 months for another 2 and every year for 6 years after that. I am fortunate to have access to the best doctors in Philadelphia,(Penn) and have amazing family/friends advocating for me as well.  My surgery is on April 15th.  I am sure the months after the surgery will be difficult for me emotionally, but its the best option I have.

It all has been going so quickly.  There isn't a lot out there on this particular cancer/location so everyone seems to be referring to other Sarcomas which are much bigger than mine and often more aggressive. I have found it frustrating to talk to the doctors about just how much of my finger needs to go. I feel like I am fighting for my finger. In my opinion there is a lot of guessing at the amount to remove. Being conservative and taking more than they need off for margins seems to be the norm. Initially they were talking about taking both of my knuckle joints and after meeting with 3 doctors and batting around the situation and specifics we have agreed I can keep one joint so I will only lose 1/2 of my finger. That means everything to me. Even 1/4 of an inch is hugely important to me. It might be vain but I have to live with this finger and look at it for the rest of my life.  I want to be 100 % safe and cancer free, but I also don't want to just lop off more than is needed. Technology is great today and they can test the margins during the actual surgery. It takes more effort on the doctor's part but for me it gives me the piece of mind that I did everything I could to keep the most amount of my finger safely. That being said, I am happy for them to take the parts that they need to take so that I live long enough to see my grandchildren grow up.

I have been joking a lot about the amputation and am a fan of the dark humor :) I keep telling people they have to be really really nice to me until April 15th because "I have cancer"... but after that.. I am moving forward with the assumption that I will be cancer free and I don't want to dwell on it. :) 

I think my second biggest fear (death being the first) is that having an amputated finger will be a conversation stopper. That people will find it creepy and feel uncomfortable.  I am sure that this is just my perception and it will all be fine, but it's my fear, rational or not (I will add that even I think its creepy! lol).  I think I need to come up with a cool story to tell. "I was camping in Alaska and a grizzly bear attacked my group. I fought it off so everyone got out safely, but it chewed off my finger."  My son is designing me a cool 3-d printed robotic prostheses :)  I like the idea of something interesting, not one that looks like its trying to be a finger. Maybe an ET finger prosthetic! lol

I am going to try to blog about this because this cancer is so rare and I haven't been able to find out much online.  It might help someone else out there.

Monday, March 13, 2017

1 Year and a Trip to Cambridge and Hamburg

So it was, that nearly a year ago I had some seemingly benign cyst removed from my finger. I went off to Mexico for spring break with my family and thought nothing more of it. That was the beginning of my cancer saga. Fast forward to now and things are looking brighter. I am 1/2 a digit short but my chest scans continue to be clear. :)

So the Yang - There were 2 days that were the absolute worse. First was the day I found out I had cancer.  They told me that the best case scenario was losing my finger and the worse was death.  I am a fan of a 'win win' not a 'lose lose'! Anyway so far I got the best case scenario.  The 2nd worse day was the day I removed the bandage and saw my finger missing. It still makes me weep tbh. Im not sure why not being whole is so devastating, but I can only imagine the mourning that must occur with people losing limbs.  Life goes on and we adjust but something inside is still a bit broken. I feel like I shouldnt be complaining as I do have a charmed life and no one around me even seems to notice anymore... but its something lonely, deep and guttural that I feel.

Anyway onto the Yin.  I had a lovely visit to Cambridge UK. What a charming city steeped in history.  Got to visit the HQ of the gaming company that makes the online game I play and spend time with some long time friends I met through the game. Crazy world really... I travel the world with people I met online through a game. Life for me, is an ongoing adventure.



A friend and I went from the HQ meetup to Hamburg Germany to visit another gaming friend and her husband. What a fun city Hamburg is!  From the history of the shipping industry to the nightlife of the Reeperbahn and the amazing food... we had an awesome weekend! I feel really lucky! <3  Next trip Mexico in 2 weeks.


A real HAMBURGER! 


great site to use for new yr

http://www.basicgrowth.com/live-longer-stop-time-waste/


I'm Doing it all Right but it Still Feels Wrong!



4 Fun Ways to Defy Your Age

4 Fun Ways to Defy Your Age
If you make decisions based solely on how much time in your life has ticked by, you’ll miss out on some awesome experiences.

By Ariane de Bonvoisin

Our society is obsessed with age. But thinking that you’re too old—or too young—to do something creates unnecessary obstacles. Your greatest career, relationship, and self-growth opportunities can happen at any time. I went from working in the high-stakes field of venture capital to becoming a speaker and entrepreneur. Along the way, I met a man nine years my junior, had a baby at 40, and moved to South Africa. My greatest sources of happiness have resulted from never having let my age dictate where I should be—personally or professionally. And you shouldn’t either. Follow these four tips to liberate yourself from the shackles of age-bound thinking.
Let go of age milestones.
We all have goals that we think we have to achieve by a specific age, such as getting married, having a kid, or buying a home. Ask yourself, What do I think I should have done by now? You’ll be stunned at how controlling your subconscious mind is. Now, look at what you have achieved. Odds are, you’ve accomplished more than you give yourself credit for.
Make friends who are not your age.
A diverse workforce, social media, and fitness classes filled with folks of all ages present us with opportunities to make friends with people who aren’t our peers. Once you do, you’ll start to let go of age-based preconceptions. Their accomplishments may inspire you, or you could become an inspiration to one of them. You may even fall in love with one of these lovely souls!
Follow the +10/-10 rule.
If your brain is telling you you’re too old or too young for something—such as starting your own business, taking time off to travel the world, or earning a new degree—use this simple query as a measuring stick: If you were 10 years younger or 10 years older, would you do it? If the answer to either is yes, then go for it!
Do some age-inappropriate things.
Forget about how old your body actually is and do some stuff you don’t think is age-appropriate. Go clubbing, ask for a lofty promotion, dye your hair a bold new color—whatever challenges your notion of maturity or immaturity. Many of us put restrictions on our actions; we want to be “normal,” avoid ridicule, and simply fit in. But trying too hard to fit in can be a joy sapper. So from now on, choose the paths that fit your personality and your desires, without age constraints.

Tuesday, April 19, 2016

Farewell to Cancer and to my Finger Party


Hosting a party may seem like a strange thing to do when you have just been diagnosed with cancer, but it gave me something positive to throw myself into while I waited for the day of surgery. 10 days after diagnosis I had a Farewell party. Dark humor kept it all fun and positive. I was surrounded with family and friends.  It was wonderful. One friend had temporary tattoos for people to put on their pointer fingers in a show of solidarity and I even had one friend dye her hair pink in support. She's a nut :)

I lasted from 7-11 then hit the proverbial wall and pulled an Irish goodbye (going upstairs to bed without saying goodnight/goodbye to my guests) so that they continued to have fun. It was really fun to hear them all down there having fun on my behalf. I am so lucky to have such great support. <3

One last thought,  if ever you come across a situation like this, never ever tell the amputee stories of when you sliced off the top of your finger with a mandolin. Or when your uncle had his fingers cut off by a saw... It doesnt make us feel better!  Just sayin...

Tuesday, April 5, 2016

Events and Thoughts From Week 1

I wont blog about every day of every week, but I think this week is important.

Weds I got the news. Needless to say, it was an emotional day. Not really a blur.  It was more of an exhausting frightening time. No one likes to think about their mortality.  Its not the first time I have had the experience of being bombarded with life changing bad news, but it was the first time it was about my life. I cried until I had no more tears, then after getting the good news about my clean lung scan, I told my children.  I think because I was positive (and cried out) they handled it really well.  No tears, just a lot of questions.  It was one of the worse days of my life. 

Thurs, I was able to meet with the Chief, Orthopaedic Oncology Director of the Sarcoma Program at Penn. She was more positive in her review than I expected. I was able to ask all of my questions, but it was clear that she felt I was an easy case.  Just lop off that finger and you are good to go. I got little sympathy or hand holding, but she sees people with little hope all the time so I suppose my case seemed small to her and to her credit she did me and my doctor a huge favor fitting me into her schedule on less than 24 hours notice! 

The surgeon wanted me to do the amputation the next day(Friday) but I really felt I needed to do research, and get other opinions on my situation. I was having a hard time wrapping my head around the situation. The oncologist indicated that it wouldn't matter to hold off 2 weeks to do my surgery so I opted to do that.  One week would have been perfect. I think 2 might be a bit long to wait it out... but it was my only option. I was really feeling like they were guessing at what needed to be removed from my hand.  Her comment was that I could be cancer free right now but that I would be rolling the dice if I didnt amputate. I wondered then if I could just take out the tissue next to the tumor not have to amputate... I knew in my heart the finger would have to go but I still tried to look for ways around it.

My surgeon called that evening and I recounted the meeting with the oncologist. He had already spoken to the her.  He, being the wonderful guy he is, offered to arrange a meeting between me and a PA he worked with at Penn that has an amputated finger (female with the same finger as mine missing). We agreed to meet after his surgeries Friday.  

Friday, 4/1 I was really nervous. If I am honest I find amputations a bit creepy. I know.. its shallow and silly but I am being honest!  Hers was lower than mine was but it didnt look bad. She was so gracious and encouraging. She even gave me her number so we can keep in touch.  I mentioned that I was going to throw myself a Farewell to my Finger and Cancer Party and both she and my surgeon wanted to come. :)  I cant say that seeing her hand made me feel better, but listening to her attitude about it really did. She embraces it as part of who she is. I felt really upbeat after the meeting. Positive and nearly happy. Its such a roller coaster ride.

Sat through Mon, I tanked. I have been depressed and so fatigued. I've barely left the house or my bed for that matter. Not good. I have several doctors appointments scheduled (dentist and knee ortho) which I will keep. I am going to try to focus on the party... and I am going to write. I think it will help me to blog this experience.  Sunday I joined http://www.rare-cancer.org/ . I was searching and found a woman with a similar story and a cancer that must be a cousin of what I have. She has had her finger and part of her hand removed. Her attitude is amazing and she had all positive things to say. It helps. 

(before pic of the lump they thought was a ganglion cyst, and after surgery pic with the indication for where they will cut)Tues (day 6 since diagnosis) I feel like I am emotionally on the way back up. I met with a Psychiatrist  today and while she was really expensive, I found her to be really helpful. She helped link a lot of my thoughts together. She gave me some tools... It was great.  I will see her a week after the surgery. 



Tuesday, April 28, 2015

week 24 - Green Beer and New Songs


Boom! Bap! Pow! - Suit  




Your so cute I wanna wear you like a suit
I think you'd look pretty good on me 









Your so cute I wanna wear you like a suit 
I think you'd look pretty good on me 

ok alright ok alright!

St Patricks Day 2015


Its official... I have had Green Beer on St. Patricks Day! (Dont need to be doing that a second time lol)

Week 23 - Ted All Week Long!

The book Jill Bolte wrote about her experience as a neurologist and stroke survivor was really moving to me and I have since given it to 2 friends.  When I heard that she was giving a Ted Talk I was eager to listen and meet this woman.  I loved the venue and so I decided to watch or listen to one each day this week! :)  Here is the link if you want to browse: https://www.ted.com/talks?page=2 .

For my week I sampled the following:

1. My Stroke of Insight - Jill Bolte
https://www.ted.com/talks/jill_bolte_taylor_s_powerful_stroke_of_insight

2. Encryption Technology - Andy Yen
https://www.ted.com/talks/andy_yen_think_your_email_s_private_think_again#t-615252

3.http://www.npr.org/podcasts/510298/ted-radio-hour

    The Unknown Brain


4.Success (R)

5.Spoken And Unspoken (R)

6. https://www.ted.com/talks/ricardo_semler_radical_wisdom_for_a_company_a_school_a_life

7.https://www.ted.com/talks/nadine_burke_harris_how_childhood_trauma_affects_health_across_a_lifetime
#Tedtalk #mystrokeofinsight

Week 22 Movies

This weeks firsts were intended to push me out of my comfort zone.

1. I invited a friend to the Member/Guest Paddle Tennis Tournament at my club.
It was really fun but a bit unnerving. Its a round robin and we were out matched quite a bit. Still fun and you cant learn if you dont try new things!  My first time doing it in the 5 yrs I have been invited.

2. This week I went to the movies alone twice AND I went to 2 really interesting cinemas.
The Movie Tavern and the newly renovated Springfield Cinema.

The first is in Phoenixville.  I saw 50 Shades of Gray
(the really odd part was that there were only 5 other people in the theatre with me and 3 of us were alone haha) I had a salad, diet coke and watched.  BTW It was good but there wasn't any chemistry between the actors.  The book was better as usual.

I saw the 2nd film in Springfield at a newly renovated cinema that had BARCALOUNGERS! lol http://en.wikipedia.org/wiki/Barcalounger Now if it only had a massage feature and someone doing my pedicure... would have been nearly perfect. 

Sunday, March 8, 2015

Week 21 Forget the Pasties... Go for Falsies!

No, pasties weren't really on the table.  That wouldn't have been very pretty when I was in my 20's so defo not something I would do now!!  
False eyelashes though... now that sounded interesting!  I am lucky that I have fairly good lashes. Dark and lots of them. 

 My first attempt was on Friday night. I had a friends 40th birthday celebration in Philadelphia.  I thought it the perfect time to unveil the lashes!  So the experience went something like this... - Watch 3 youtube 'how to' videos.
- Trim lashes,
- 4-5 attempts to put it on the first eye... with tweezers and without , not much luck ...lots of white glue showing (if you wait long enough it does dry).

I finally got one eye done and liked it, but then I needed to match it on the other side! That means, the same starting and ending points and the same distance away from the lashes.  Not easy at first but with some practice I am sure it becomes so.


Pretty results.  I will say that you have to use fairly thick liner though to hide the seam of the lashes, so if you aren't a big makeup wearer this probably isn't for you, or have them done professionally.  I should have saved the url for this video I watched and gave her a shout out but I forgot.  I tried to find her again on Youtube but I couldn't... 
(eek I cant believe I am posting a video of me without makeup AND all of these close up shots! haha Thinking that might be a first too!)
video




 Saturday night I had another party so I decided to put them on again! No one noticed this time either lol.  It wasn't any easier the second time, but it was still very fun to wear them.  If I do it again I will choose longer thicker lashes.  Also this makes me think I should try extensions! Found a blog that suggested dying your lashes as an option... ( http://loveswah.com/2015/02/beauty-tips-before-you-travel/ )Might have to do that over the summer! #falseeyelashes #lashes


















Week 20 - Polar Bear Plunge


I was asked, several times leading up to the plunge, why would you want to take your clothes off in 28F snowy weather to jump into a 36F ocean?
Well, I am looking for things to take me out of my comfort zone. To try things I wouldn't have otherwise done... and who knows I might just discover something new about myself and the world!  Soooo I scooped up some support and other adventurers and headed to Sea Isle City, NJ!



 It was cold but the adrenaline rush that happened was amazing. Once we took off our clothes (I wore a bathing suit, robe, hat, scarf and throw away shoes) it kicked in and none of us were uncomfortably cold!  My husband, friend B and I were the only 'Plungers' in the group. We brought 3 other girlfriends to cheer us along.
When the whistle blew, everyone began herding into the water.  I got so caught up in the moment I forgot to drop my robe lol  I hiked it up to my shoulders and ran.  The entry was not bad. I plunged up to but not including my bathing suit bottoms (not much worse than a cold wet 90 min ride home) then headed out. The splashing was the biggest problem because as the first wave is running out, the next is running in! Its cold but you instantly go numb where you touched the water so you arent cold!  Afterwards we went for pizza. The 3 of us plungers felt great until we ate... 10 mins afterwards we all started shaking and shivering. My lips went literally blue!  I dont know that I have been thankful for a long hot car ride before, but I was on that day! It was a remarkable experience and all of us agreed we would do it again! #polarbearplunge 

Tuesday, February 17, 2015

Week 19 Battle of the Bulge..Monument


I personally, am in a perpetual battle of the bulge, but that isnt what this post is about! lol  



For years I have driven past these signs on nearly a daily basis without having the foggiest notion of where/what the monument was! I was in need of a first for the week so I decided to explore. I am so glad that I did!

Turns out the monument is on the campus of Vally Forge Military Academy (Specifically its on Eagle Rd. along side of the parking lot.) Siri (my Iphone BFF) had no idea what I was trying to find.  I ended up googling it and finally found someone else who had posted about his visit and I stumbled upon it. (Shout out to Scott @ http://www.scottmanning.com/content/bulge-monument-valley-forge/ )



The Battle of the Bulge (16 December 1944 – 25 January 1945) http://en.wikipedia.org/wiki/Battle_of_the_Bulge

            The battle is significant in the course of World War II because it is seen by most as Hitler’s last major offensive. The battle was intended to split Allied lines and force negotiated peace, but the American forces were able to contain the battle!  The Germans lost so many troops and equipment that they couldnt launch another attack on the Allied forces. The Battle of the Bulge is most significant because, in essence it brought about the end of the war. 


             Really interesting stories from the soldiers themselves in the PBS link below.


 On the monument itself is a quote from Winston Churchill 

“This is undoubtedly the greatest American battle of the war, and will, I believe be regarded as an ever famous American victory.”


Though I found differing statistics on how many troops were involved and how many casualties, All sources I read agreed on the importance of the war and the sever  loss of life.  

The other interesting thing I uncovered while digging around is that Hitler may have had a son.  http://www.hitlerschildren.com/article/591-did-hitler-have-children  Jean-Marie Loret, claims his mother had an affair with Hitler when she was 16 and he was the result. He wrote a memoir, Your Father's Name was Hitler, which is where he discusses what his mother said about his father before she died. Facts are still being validated.  He died in 1985 but was survived by children. I wonder if we will ever know.  #battleofthebulge #hitlerschildren