Archives for posts with tag: Coping with cancer

There was about a month-and-a-half between my right side mastectomy and the placement of the tissue expander. Consequently, I lived with an “unleavened breast” for a good while. I needed some humor to help me deal with the state of my body. So I wrote, not one, not two, but three blogs with joke names for my breasts.  Looking back at this, it seems a bit absurd. But it did help get me through a rough time. Honestly, 

I originally posted Righty Needs a New Name on 8/28/13.

For some reason, I am finding a need to refer to the right side of my chest as something other than “surgical site.” It’s going to be several weeks before I start the temporary inflation process with the tissue expander so a name would be handy. And yes, I could stick with “righty” but that implies some kind of symmetry with “lefty”.  A few ideas of various levels of quality:

The Tissue Formerly Known as Righty
Breast-to-Be (I kind of like this one. Maybe a friend will throw me a shower before surgery. Yay, presents!)
Vegetarian Sweater Meat
Ugly Duckling (Some day it will turn into a bee-you-ti-ful swan.)
Breasterpillar (Some day it will turn into a bee-you-ti-ful breasterfly.)
Puppy Pupa (continuing with the metamorphosis theme)
Empty Jug
Sad Sack (waah!)
Berefticle (waah!)
Scarla
Storage Chest
Bosom in Waiting
Breast, in Space Saver Mode
Unleavened Breast
Late Bloomer
Bosom’s Buddy
Fixer Upper
Do-Over
The Start of Something Big
Under the Shoulder Boulder Holder

The next day, I had still not gotten this out of my system and I posted, The Name Game (Continued).

Okay, so my cousin, Beth got me thinking about coming up with names for both righty and lefty. They are a set of a kind. So here goes, my stream of consciousness. As I did yesterday, I will add more as inspiration arises:

Boob and Boo Boo
Scooby and Scrappy
Lefty and Lucy (inspired by John’s suggestion “Righty Tighty and Lefty Loose-y”, which is backwards, unfortunately)
Benjamin and Button
Mammy and Mummy
Party and Pooped
Ta-da! and To-do
Zan and Jayna (The Wonder Twins, suggestion thanks to Lisa)
Waggy and Baggy
Jiggly and Scraggly
Lennie and Squiggy
Herman and Pee Wee
Judy and Punched
Hit and Miss
Denver and Phoenix (Okay, a little obscure but think about it and then groan.)
Teton and Won Ton
Ham Bow and Big Ow
Yin and Yang
Mickey and Mini (spelling intentional and I hear you all groaning.)
Bonnie and Clyde
Cupid and Psyche
Ernie and Bert (Okay, this one makes no sense but made me smile so I’m keeping it.)
Lilo and Stitched
Oscar and Felix
Simba and Scar
Wow and Ow

On 8/31/13, my parents got into the act so of course, I posted it in, Name Game-Part III, A Family Affair.

So my mom has been dying to come up with a name to contribute to the name game. Earlier today she told me that she didn’t think she could think of something because because she “loved me too much” and didn’t want to make light of my cancer.

Oh how the love has faded because, drum roll please…, she has contributed:

Liv and Let Live

My dad, not to be left out and offering a mechanical interpretation:

Built and Re-Built

Both of those ideas made me laugh aloud after a very hard day. So I guess they love me a lot after all.

When faced with cancer or any other serious illness, it is only natural to think about the uncertainty of our futures. Lately, I find myself thinking about this more frequently. A year after diagnosis, I find myself finding more and more room for non-cancer related life, “the new normal” as it is often called.

I find myself thinking that I have no way of knowing whether I have cancer in my body or not. Frankly, this is the truth for everyone with “no evidence of disease.” I don’t know if it will come back. I also know that just like everyone else, I may have a different serious disease or injury in my future. And my family and friends will face illnesses and other hardships. We often think about disease and death as the enemy, but they are part of the natural world, and we will all face them.

By nature, I crave certainty and dislike ambiguity. In my job, I help kids and families reduce the chaos in their lives. I am the family administrator at home. I may have even been described as a “control freak”, maybe just maybe, once or twice in my life.

The last two years have been the most challenging in my life. I been been mired situations that I’d hoped I’d never have to face, full of ambiguities and dire possibilities.

What I have been noticing the most in the last month or so is the fact that I am not freaking out. Even in the scariest, grayest parts of these years, I’ve found a constant. There has always been love. Love from family, love from friends, love from healthcare providers committed to help. And the love I have for others is stronger than ever.

Life can be murky, ambiguous, and downright scary. But love is clear and love is always beautiful.

XOXOXO

Love-in-a-mist is a lovely but tough flower. If you plant it in your garden, you will have it forever.

Love-in-a-mist is a lovely but tough flower. If you plant it in your garden, you will have it forever.

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One of the dear people in my life has Parkinson’s disease. She is an amazing woman. I met her as an undergraduate psychology major at the University of Washington. She was a grad student looking for research assistants. Her research sounded fascinating and I ended up working in her lab for 2-3 years. She was a wonderful mentor and took a faculty position in the Midwest upon graduation. I haven’t seen her in person since then but we stay in touch through Facebook and email. (She is legally deaf so the phone is not a good option.)

Her disease had an early onset. She noticed tremor in her hands while she was in the hospital just after delivering her daughter, who is now 12 years old. She was doing really well for the first few years. She went skydiving and traveled with her family. Eventually, though, she had to retire early from the faculty job she loved. She still drives and is ambulatory but I suspect this is true on an intermittent rather than daily basis. She has undergone two heart surgeries. She “flat lined” after the most recent one while in the hospital and it took the medical team some time to revive her. She remembers this time keenly and her unwavering focus on staying alive for her children. Her physicians have suggested brain surgery. She has not warmed to that option. She takes medications that cause all kinds of side effects. She knows that her health will continue to deteriorate as will her ability to take care of herself and stay connected with others. In other words, Parkinson’s is not a light-weight disease. It is chronic, it is progressive, and it ends lives.

Yesterday, I was following one of her Facebook discussions. (She is the most active Facebooker I know in terms of getting conversations and debates going.) At one point she was discussing Parkinson’s with a friend who also has it. They were talking about the hardships and then she ended one of her comments with, “At least it’s not cancer.” Although it surprised me a bit, I was not hurt in the least that she wrote this. But it is a great example of a sentiment I still hear a great deal from people, which is that cancer is the worst disease ever. It’s not a coincidence that a Pulitzer Prize winning history of cancer is cancer is called, The Emperor of all Maladies.

So the good news is that not everyone has been “pink washed” into thinking that there are kinds of cancer that are “the good cancer” or that cancer is cute or easy. The bad news is that the fear that people have of our “Emperor of all Maladies” will keep many of us, especially those with metastatic breast cancer, that much more isolated. Scorchy Barrington wrote about this isolation beautifully earlier in the week. Another blog buddy, Diane of Dglassme, wrote a beautiful comment on Scorchy’s post. I would copy it here but she might want to write a post about it in her own blog because it is that good.

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This post is inspired by Mogatos, the author of the excellent blog, Saying Nope to Breast Cancer.  She is in her early 30’s and had a prophylatic bilateral mastectomy due to her high genetic risk of breast cancer. Mogatos is a very courageous person who is helping lots of women. She has created a photo diary of her physical transformation since her mastectomy surgery in January. If you are interested in the two stage tissue expander/implant reconstruction process, I particularly recommend the site to you. Mogatos even painstakingly lists the costs of her medical care. Once I’m done with one of my medical bills, I don’t ever want to see it again.

I have had a request or two to see my reconstruction. I’m sorry to say that I am not evolved enough to share more than a photo of my belly button to the blogisphere. However, I have put together a visual showing my surgical process. Although breast cancer isn’t funny, using humor to cope with its threat is serious business.

smiley3

 

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After two weeks of single parenting and taking care of me, my husband is worn out. He is taking his second sick day this week. Poor guy.

And don’t worry, I’m not going to try to be a dynamo and take over the way I did after my mastectomy. I need rest. After going to Zoey’s concert and walking two miles a couple of days later, I needed to sit on my butt and/or nap for the next day and a half.

I feel pretty good today so I’m going to get out of the miracle lounger for awhile. The forecast for this afternoon is 60 degrees! I think I will take a walk.

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