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Today, I am sitting in the waiting room at the surgical services for the Swedish Cancer Institute. I’ve been here many times before as a patient and I will be here again in the future, as a patient. But today, I am here as a support person. One of our family friends was recently diagnosed with breast cancer. I offered to come to the first surgery consultation with her and her husband.

One of the Health Activist Writer’s Challenge writing prompts is to provide tips to the newly diagnosed. I will use my experience this morning, as well as my recollection of my own thoughts and feelings from my own initial consult last May, to inform future post dedicated to this subject.

But first and foremost, I hope to be helpful in this meeting. This is a scary time in the process, where the “what if'” greatly outweighs the “what is”.

Stay tuned.

This post was inspired by the Health Activist Writers’ challenge for the month of April. I write “inspired by” because I have yet to use one of their suggested daily writing prompts.

As a child psychologist, I am often advising the mothers of my patients to take more time for self-care. A frequent response is, “I know, but I just don’t have time,” to which I reply, “If you feel you have no time for this than you have been without time for yourself for far too long and this is even more reason to do it!”

I know I am asking a lot of moms who are already taxed with parenting, work, and household responsibilities. I have struggled with the same life balance issue myself over the years, especially since becoming a mom 14 1/2 years ago. One of the valuable lessons I am continuing to learn as a breast cancer patient is to take care of myself, I mean REALLY take care of myself. It’s not that I was living a martyr’s life but I was not taking sufficient care of my health. To do this properly, takes time.

In 2002, I was laid off from my very first job following the completion of my post-doc. To make a long story short, the job was ugly. It was the first time in my life that I was treated like I was incompetent. Down deep I knew that I wasn’t incompetent but to be treated this way for nearly three years in my first “real job” and right after becoming a mom was a major blow. The lay off itself was done in a fairly nasty and unfair fashion. It was toward the end of that job that I had my first of two incidences of Major Depression. (The second incidence occurred a couple of years later but only lasted 2 weeks because I got back into treatment immediately after recognizing that I was not myself). It was BAD. It wasn’t just sadness, which is what a lot of people mean when they say, “I’m depressed.” I had no appetite. Food was flavorless. I lost 10 pounds in a week. My sleep was messed up and I had to will myself through each day to have enough energy to parent Zoey who was a toddler at the time. She has always been an empathetic girl and at the time, was learning to read facial expressions. I remember feeling heartbreaking guilt and sadness one day. She was sitting in my lap, looked up at my face, used her fingers to push my mouth into a smile while anxiously asking, “Mama happy?”

Being laid off and depressed was a major wake up call for taking care of myself. And since I was laid off and able to collect unemployment for a few months, I was able to make use of the time to figure out what to do with my life professionally. At that point, I decided that I would never rely on one source of salary again if I could help it. So in 2002, I applied and tested for my psychology license in Washington state and in 2003, started my private practice. Meanwhile, I was writing research grants and ended up being employed through two of them, the longer one landing me on the research staff of the Social Development Research Group at the University of Washington. I worked there until 2007 until the research money ran out. I was unable to secure funding for more grants. As the money ran out, I expanded my practice and then by the time I left U.W. in April of 2007, I was able to build up my practice to full time. Although being in private practice had not previously been an aspiration of mine, it ended up being the perfect job for me.

So although I would not have taken that job had I known what it was going to be like, I got some very positive life lessons out of it. Also, I made a number of friends at that crazy job including my dear friends, Jennie and Lisa, whom I’ve mentioned in my blog. Hmm, taking the opportunities afforded by crappy life circumstances to glean important life lessons? Gee, that kind of sounds like my breast cancer experience thus far.

Fortunately, I was able to use some of those life lessons from my crappy job experience to cope with my breast cancer better and to avoid getting depressed again. Sorry, I hate being depressed. And yes I have grief, but healthy grief and clinical depression are not the same thing.

So having breast cancer and especially the time off after my major surgeries, has given me some time to revise my life plan so that I am a happier and healthier person. As I mentioned previously, taking care of myself takes time and emotional space. I will not always need this much time and this much emotional space but right now I do. At first, this was a hard adjustment for my husband because healing has meant my being more emotionally distant than usual. (And no, I don’t just mean less sex.) We had to develop different ways of spending time together, for example, John started accompanying me on my walks on the weekends. He also eats all of the healthy dinners I make ahead of time in reasonable dinner-sized portions and freeze. The walking and the diet change have been part of the reason that John has lost 22 pounds. My taking care of myself has also meant that John had to take on more responsibility and learn how to take care of me after surgeries. It has also meant John taking care of some of his own health issues better.

For Zoey, my cancer has meant worrying about a parent’s mortality at an earlier age than average. It has meant seeing me less energetic and weaker at times. But overall, I am very happy to report that Zoey has more than risen to the challenge. She fairly quickly snapped out of the angry, eye rolling teen stuff that she was directing toward me and started treating me much more respectfully and affectionately. She is often there with a glass of ice water when she sees me fanning myself during a hot flash and she secretly changed my screen saver to a banner that reads, “I love you, Mom,” just because. Sure we have our moments and she is still able to be disrespectful and her eye rolling muscles aren’t totally lax. And having a mom who is a breast cancer patient when she is a 14 year-old girl makes her life harder. I wish she didn’t have to go through this. But she has grown enormously.

Finally, by taking care of myself, ultimately, I will take better care of my patients. Some of them are feeling a little anxious and impatient because I am off work again for an extended time. But if I don’t take care of myself, I will not have enough energy to do a good job. And as my dear friend, Nancy points out, by taking care of myself and coping positively with a major life stressor, I am modeling valuable skills for the families I see.

So even though the villagers were not initially happy with my changing my life to have a stronger focus on self-care, ultimately, my self-care is reaping benefits for the villagers.

I do believe that there is more than one good solution to every problem but perhaps this lesson could be helpful to some of you readers out there.

 

April is the Health Activist Writers’ Month Challenge to write 30 health related posts in 30 days. Today’s post reflects my taking on this challenge of not only posting 30 health-related items in 30 days but to incorporate some activism into my blog.

Last spring, like many younger than average breast cancer patients, I had my blood drawn and sent to Myriad Laboratories for genetic testing. The purpose of the test was to determine whether my BRCA 1 or BRCA 2 genes were mutated. As most of you know, BRCA 1 and 2 protect against breast and ovarian cancer, so if one or more of them are mutated, you lose some of that protection. One of them protects men against prostate cancer. My understanding is that although most breast cancer is not due to BRCA mutations and that only an estimated 5% of breast cancers are believed to be genetic, the risk of breast cancer for women with 1 or more of the mutations is 90% and the risk of ovarian cancer is 40%. Furthermore, BRCA 1 and 2 mutations are highly heritable.

Fortunately, I did not have either genetic mutation and further, there is a relatively low incidence of breast cancer in my extended family history. But the stakes for individuals with these mutations is high. Women who test positively for the mutation/s are often advised to 1) get a bilateral mastectomy or get annual MRI’s and diagnostic mammograms and 2) have their ovaries removed. (The reasoning being that ovarian cancer is difficult to detect until it is advanced.) These recommendations are also often given to women who test positive for the genes but who do not have breast cancer.

BRCA testing is very expensive and is not covered by all insurance companies. Further, many people in this country do not have adequate health insurance. My wonderful genetics counselor told me that there is only one lab in the country, Myriad Labs, that does this testing. I thought this was curious but didn’t give it much thought at the time because I was busy freaking out about having just been told that I had breast cancer.

The reason that Myriad is the only laboratory that performs the tests is because the U.S. Patent Office granted them a patent on the BRCA 1 and BRCA 2 genes! So a company has patented human genes! They are the only lab that is allowed to do the test. I’m no patent attorney, but this is more than a little alarming to me. What does it mean to patent a gene? A gene is an actual physical thing. If old college and grad school memories are correct, genes are just particular sequences of amino acids that have a particular location on a chromosome. (Okay, I just looked it up and it is the sequence of nucleotides, not amino acids, and I’m not going to start over because my brain just exploded.) I thought patents deal with intellectual property. What is the intellectual property at stake here? Do they own the right to examine and glean information from these particular genes? I’m confused.

So whose DNA is it, anyway? This question, in respect to the BRCA 1 and 2 tests, is being examined by the U.S. Supreme Court starting on April 15th. I for one, will be following this decision closely.

I first learned about this issue through my involvement with the Empowered Doctor website. Their article can be found here. Another good article can be found on the New York Times Book Review website.

Hey Myriad, if Watson and Crick could share credit for their independent discoveries of DNA, why can't you share with other labs? (Image from Wikipedia)

Hey Myriad, if Watson and Crick could share credit for their independent discoveries of DNA, why can’t you share with other labs? (Image from Wikipedia)

My recovery continues, though at a slower pace. Nonetheless, I’ve passed a few milestones in the last week:

1) I tried on the swim suit I bought awhile back and not only does it fit, but I look normal in the chest area. Woo hoo!

2) The miracle lounger went back to the medical supply company this morning. I still need to spend a lot of time sleeping as well as most of the day off of my feet but sleeping in bed has gotten comfortable again and our couch is again comfy. I miss my tray table, though. My laptop computer is warm and although it is comfortably resting on my legs right now, I expect it will cause some hot flashes later in the day.

3) I averaged 3 miles a day of walking, for seven days straight! Yesterday I was beat so I stayed in. I didn’t make myself feel guilty about it but instead reminded myself that walking every day is above my health goals. I started walking every day instead of 5 times a week because it felt good and I wanted to do it. So yesterday I was mindful that my body was not up to doing a “bonus round” of exercising.

4) On Sunday, I cooked for the first time since the surgery. I wanted to bring something to my brother and sister-in-law’s for Easter dinner. I roasted some asparagus. It took me 15 minutes, including washing, trimming, and cooking. They were delicious.

 

Okay, this post is not really about the versatility of the chia seed, although I can think of five uses for it off of the top of my head. Prior to becoming a cancer patient, I could only think of two, the original “Chia Pet” and the take off from Saturday Night Live, when they had Kevin Nealon plant chia seeds on his head to replace hair loss.

The I suspect not-so-cranky, Cranky of “Grandma Says” has nominated me for the Versatile Blogger Award.

versatileblogger111

Thanks, Not-So-Cranky! Many of you out there are familiar with these nominations. The nomination is the award and the process works likes the kindest chain letter you will ever receive! The rules are to post the graphic of the award, for me to tell some random facts about myself, and to nominate 15 other blogs for the award.

As you may also know, I try to follow the spirit rather than the letter of the law when it comes to these awards, though this time I actually posted the graphic. It’s very easy. I’m not sure why I haven’t done it previously.

As for the random facts, I did that once but at this point, how many more factoids can I really give you and have them be a surprise? I guess I will give it a try but just one fact. I need to save some material for future blog posts.

1) I love autobiographies and read about all kinds of people, from Malcom X, to gardeners, to chefs, to musicians, to world travelers, to actors, to comedians, to the understudy for Elphaba in Wicked, to RuPaul. People, I even read Andre Agassi’s autobiography and I’m not even a tennis fan. And by the way, it’s a pretty absorbing read.

Instead of nominating 15 bloggers, I am going to feature a blog, which is in line with my quest for health and healing. At the risk of appearing to be a creepy stalker, I am again highlighting my friend, Mike. (If you are reading this, Mike, I am not a creepy stalker.)

As you know, I changed my diet to improve my general health as well as to eat things that are linked to a reduced risk of cancer. I have also extended my health practices beyond traditional medicine. I like to use as many sources as I can. I see the usual suspects, onco surgeon, medical oncologist, internist, but I also see a licensed massage therapist, psychologist, and a naturopathic physician who is certified in cancer treatment.

I am about to embark on a journey to Chinese medicine. I am particularly interested in acupuncture. My most immediate concern is doing something about my stupid hot flashes. I also know that there are other potential positive applications of acupuncture to be explored.

Now some of you might be thinking, “Elizabeth, don’t you have a Ph.D.? Aren’t you always talking about how you were an academic researcher for so many years? Why have you been doing all of this alternative stuff?”

First, my own philosophy fits more into the “integrative” model than “alternative” model. Integrative healthcare is inclusive. Even mainstream Western medicine is getting increasingly integrated. At the Swedish Cancer Institute, there are naturopaths and licensed massage therapists. There are classes on mindfulness meditation and diet.

I am also glad that more non-traditional therapies are being researched using western research strategies. I very much respect that there are other ways of supporting the efficacy of a treatment. Practitioners of Chinese medicine, for example, often point to thousands of years of accumulated clinical evidence. However, the investigative tools that I have at my disposal for evaluating potential treatments are western based. In other words, I am in a better position to critically evaluate research articles than to evaluate evidence gleaned through other methods. I don’t think any reputable healthcare provider is going to discourage patients from being careful about how they treat their bodies, especially cancer patients. There are people who prey on cancer patients. There are also good hearted people who do not have the skills or expertise to responsibly provide healthcare advice but they do so, nonetheless. I am very leery of folks who think something is harmless just because it is “natural” or because it is delivered by a non-traditional provider, who must be superior to a traditional provider because the latter group are bad.

I would like to re-introduce you to my friend, Michael Ishii, of Stonewell Acupuncture. He practices Chinese medicine in New York City. He also writes an informative health blog. Some of his posts are recipes, one of which, I’ve cut and pasted below for a nutritious gluten-free chia dessert. See, I told you that the chia seed figured in this post. Chia is also used in some gluten-free bread recipes as an alternative dough binder to xanthum or guar gums. I have not yet tried this out but plan to once I used up my “economy” (“economy” being relative as gluten-free ingredients tend to be pricey) sized bag of xanthum gum.

Try it out!

Vegan Chia Pudding: Delicious Super Healthy Treat!

Vegan Chia Pudding

OK, remember the Chia Pet TV commericals?
Who would have thought that Chia seeds would be a superfood? Or so delicious!

Chia is a plant that is native to Mexico and Central America. It was cultivated by both the Aztecs and the Mayans who highly valued this food, and the word “Chia” actually means “strength” in Mayan.

Chia seeds are a source of complete proteins, they are loaded with omega 3 fatty acids, are rich in calcium, are a terrific source of anti-oxidants and have a low glycemic sugar index.

The seeds, when soaked in a liquid, swell up and become like little miniature pearls of gelatin. They remind me of tapioca.
They are high in both soluble and non-soluble fibers and hence aid digestion.

Since this food contains no gluten, they make a good staple food for those with celiac or who have gluten sensitivity.

My colleague Anca Marinescu, L.Ac., shared with me this delicious recipe for Vegan Chia Pudding.
From a Chinese dietary viewpoint, this pudding is a great Blood builder and will nourish Yin. It contains food that will help you support your circulatory system, strengthen your digestion, regulate your bowels, and support immunity.  The spices warm and support the Spleen and will open and course the meridians while supporting the Kidneys.

Go ahead, try this delicious and healthy dessert!

 Ingredients for Vegan Chia Pudding

Vegan Chia Pudding

3 Tbsp of Chia seeds
2 cups of almond milk (or soy or rice, cashew, hemp etc)
1 cup raw cashews soaked in water for 2 hours and liquid discarded
5 dates roughly chopped
2 tbsp virgin coconut oil
1 tbsp vanilla extract
2 tbsp dried coconut flakes (optional)
1 pinch of pumpkin pie spice
1 pinch of freshly grated nutmeg

Soak the Chia seeds in the almond milk for 2 hours or overnight.
Soak the raw cashews in water for 2 hours and discard liquid.
Combine all ingredients in a food processor and puree until smooth and creamy.
Chill.
Serve garnished with more coconut flakes and a sprinkle of pumpkin spice or try a garnish of fresh fruits or nuts..

makes 6 servings.

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.

I had a check-up with Dr. Welk yesterday to get my stitches taken out of my belly button. (Oh yeah, I neglected to mention that a consequence of removing a lot of abdominal tissue when creating the TRAM flap, means that the belly button needs to be attached to new skin and fat. So, my belly button is in the same place, but it’s been stitched to a whole new abdominal environment.)

Everything continues to look excellent and Dr. Welk told me that he doesn’t need to see me for another month. John and I had a number of questions, which basically boiled down to “What would Elizabeth have to do to completely wreck the TRAM surgery and need an even bigger surgery to fix it?” And no, we are not paranoid, Dr. Welk had told us of this possibility.

So here’s the “don’t” list:

1) No bathing or walking of really large dogs, who may run away unexpectedly, while you are still holding on to them.

2) No drunken table dancing.

My weekend plans are ruined.

I am not a naturally calm person. Like many successful nerds, I am naturally anxious. I like to know what to expect and if what is expected is not to my liking, I like to know how to change it. I like it when people are happy and they like me. I would like to know that my wonderful and unique daughter could never be harmed and will be a happy adult with meaningful relationships and work. I would really like it if none of the people I love got sick or died. I would also like it if my house were clean 24/7. Finally, I would like it if my daughter were to stop singing a Justin Bieber song at the top of her voice, while I am trying to write this post. I don’t care if she’s changed the words to “this is such a stupid song.” It’s REALLY loud. And it’s a Justin Bieber song and not only are his songs bad but it looks like his life may be going toward a very sad Lindsey Lohan direction. I’m a mom and a lover of kids and I don’t want a sad life for Justin Bieber, whether I like his songs or not.

But I have digressed, once again. None of us have control over our lives. We have influence and that is it. It is the same for our children’s lives. We have influence but not control. It is the same for breast cancer. I have influence to reduce the risk of recurrence or the occurrence of another potentially deadly disease, but not total control. As individuals, our relationship with the universe is one in which we matter but are not masters.

Prior to my forties, my current life circumstances would have likely put me around the bend. There would be a lot more crying and beating of my breast. I would yell at my husband, a lot, because that is what I do when I am feeling totally out of control. Or I would just stay in bed all day, every day, thinking dark and scary thoughts.

Not to say I don’t have my moments, but I am still a happy person and pretty even-keeled. To what do I attribute this calm? Well, there are  a lot of things including my wonderful friends, family, healthcare providers, and blog buddies, but today I want to talk about mindfulness.

Mindfulness meditation is the real deal. It has been used in eastern philosophical and religious traditions for a long long time and in mainstream, evidence-based psychology, and behavioral medicine for 20-30 years (yeah, I should look it up, but I am lazy). I am far from an expert in mindfulness but even my very beginner-level 10 minutes of deep breathing every morning and evening coupled with a mindset of trying to stay in the moment and observe and accept what comes my way, have gone an enormous way in helping me keep balance in my life.

And this is not a fringe practice, mind you, the big University of Washington, which is turbo-research oriented and one of the top institutions in the country (multiple disciplines including psychology and medicine), loves mindfulness. Mindfulness meditation is helpful for a myriad of difficulties from suicidality, to day-to-day stress management, to pain management, to the prevention of the recurrence of breast cancer.

I started practicing mindfulness consistently after my mastectomy. The first thing I noticed is that meditation was relaxing and unlike some other forms of meditation I have done, I wasn’t struggling to make my mind “blank”. In mindfulness, it’s not a “no-no” to drift off in thought. It’s just something that happens. The second thing I noticed was that my brain got a chance to rest. That doesn’t happen frequently for me.  I have a very busy brain, which was put into turbo drive by my cancer diagnosis. The “voices in my head” gradually became less chatty and frenetic. The third thing I noticed is that I became much less irritable and much better equipped to handle big stressors without freaking out.

If you are interested in trying it out, if only to help pass the time while you are seated in a doctor’s waiting room, I recommend any of the following resources:

Mindfulness Meditations for Teens (Yeah, I know it says “teens” but it’s my favorite and very applicable to the world of adults) by Bodhipaksa. I also see that in addition to CD form, it is now available as an mp3 download.

Mindfulness-Based Cancer Recovery: A Step-by-Step MBSR Approach to Help You Cope with Treatment and Reclaim Your Life (This is particularly good if you like a program that is laid out for you week by week. There are a number of mindfulness techniques explained, including breathing, meditation, and yoga.

Full Catastrophe Living: Using the Wisdom of Your Body and Mind to Face Stress, Pain, and Illness. (This is a good place to start if you would like a background on mindfulness meditation. The author, Dr. Kabat-Zinn has been teaching mindfulness meditation skills for decades and also produces CD’s. and mp3 downloads.)

The Tupperware hard plastic tissue expander is gone and so are the drains. My breast is nearly 100% human made from human materials. And the materials came from me. I am full of myself. I like it.

But in the spirit of “It’s more blessed to give than to receive,” let’s chat a bit about the donor site, which was my abdomen. I’m still swollen but literally shrinking by the day. A few days after surgery, my waistline was six inches larger than before surgery, even though a whole lotta tissue had been removed. The next day, I’d lost two inches. (Settle down, peeps, I’ve been keeping measurements to monitor any fluid build-up, which I didn’t notice after my expander surgery because I was too busy admiring the fact that I had cleavage again!) Today, I’m about two inches bigger than usual. This number will continue to drop, but it has been very clear since day 1 after surgery that my stomach is much flatter than it used to be.

Obviously, I expected this, in fact I relished the thought of having a flat abdomen. Even before becoming a mom, I’ve always had a little more than average size stomach, no matter whether I was at a healthy weight or not. I’ve had a few of those awkward, “Oh you’re pregnant, congratulations!” conversations. Ten years ago, I’d even lost 20 pounds and was greeted by my then hairstylist, “When is your baby due?” My response? “Four years ago.”

So you’d think I would be thrilled with development but I admit it looks a little foreign.

Some how, I will get over it!

So I felt much better this morning. That’s the good news. The bad news? The nagging thoughts that I should be doing something more productive with my time, like my business taxes! Oh wait, did I write, “nagging thoughts”? I meant to write “the nagging thoughts inspired by my nagging husband.”

John asked me two days ago when I was planning to do my part of our tax return, basically the part that covers my psychology practice. He was asking me before the surgery and I told him that it was a project that I would do during my medical leave. It takes about 2 days when I have a full tank of brain. I told John that I’d been out of the hospital less than a week and he needed to not ask me about it. He asked when he could nag remind me about it again and I told him he could ask again in a week.

Okay, so this is the same man who after I requested that we stop at my office to pick up my mail on the way home from my doctor’s appointment, asked, “You’re not thinking of WORKING are you?” He settled down when he realized that I was just planning to pick up the checks from insurance companies and patients that have accumulated in over a week since I’d been in. I am paid from many sources. There’s no auto-deposit option.

So, if you haven’t caught on by now, although I harbored those ever present feelings of love for my wonderful husband, I was also experiencing a wave of irritation. When I woke up this morning, I had a lot more energy than yesterday. I was happy and then I started feeling guilty. “Oh man, maybe I should stop putting off doing the taxes.” Then I talked myself out of it for a few minutes. Then I realized that I was really bored.

The days have been going by pretty slowly, after all, even on the ones when I nap a lot. So I started my taxes. And you know what? The time passed a lot more quickly and I have a feeling of accomplishment.

Does this mean I’m going to just push through this every day until it’s done? Probably not. In the spirit of mindfulness, I’m just going to take things as they come and make the plans that make the most sense each day.

And to cap it all off, I was able to walk a mile today and I felt good the whole time! I have now walked over 300 miles since I started tracking my walks at the beginning of December! Yay!

 

 

Lindbergh High School Reunion '82, '83, '84, '85

Join us this summer for our reunion in Renton, WA!

George Lakoff

George Lakoff has retired as Distinguished Professor of Cognitive Science and Linguistics at the University of California at Berkeley. His newest book "The Neural Mind" is now available.

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