An Email I Recieved

Here is an email I received today from the love interest of my booby sister Francine. It sums up so many emotions I have been going thru. Most importantly, the love that people have been surrounding me with. Especially the people who are strangers to me, and the folks I always thought didn’t like me:

Creating Your Own Life

Author Unknown

... Sometimes people come into your life and you know right away that they were meant to be there; they serve some sort of purpose, teach you a lesson or help figure out who you are or who you want to become.

You never know who these people may be; your roommate, neighbor, professor, long-lost friend, or even a complete stranger who, when you lock eyes with them, you know that very moment that they will affect your life in some profound way.

Sometimes things happen to you and at the time they may seem horrible, painful and unfair, but in reflection you realize that without overcoming those obstacles you would have never realized your potential, strength, willpower or heart.

Everything happens for a reason. Nothing happens by chance or by means of good or bad luck Illness, injury, love, lost moments of true greatness and sheer stupidity all occur to test the limits of your soul.

Without these small tests - whether they are events, illnesses or relationships - life would be like a smoothly paved, straight, flat road to nowhere. Safe and comfortable, but dull and utterly pointless.

The people you meet who affect your life, and the successes and downfalls you experience, create who you are; even the bad experiences can be learned from. In fact, they are probably the most poignant and important ones.

If someone hurts you, betrays you or breaks your heart, forgive them, for they have helped you learn about trust and the importanc of being cautious to whom you open your heart to.

If someone loves you, love them back unconditionally; not only because they love you, but because they are teaching you to love, and they are opening your heart and eyes to things you would have never seen or felt without them.

Make every day count. Appreciate every moment and take from it everything that you possibly can, for you may never be able to experience it again.

Talk to people you have never talked to before, and actually listen. Let yourself fall in love, break free and set your sights high. Hold your head up because you have every right to.

Tell yourself you are a great individual and believe in yourself; for if you don't believe in yourself, no one else will believe in you, either. You can make of your life anything you wish. Create your own life and then go out and live it.

Thank you to all of you for being part of my life and part of my life's work.

Support and Puddles

Yesterday really was a good day. I can say that honestly. I think my step-daughter and my job helped me put some things into perspective. I can’t say that that perspective makes what I am going thru easier, it just helped to remind me that there are people in this world who have gone thru, and go thru, worse things. And they do it with dignity and grace. I need to get thru this with dignity and grace. And sarcasm.

And the support has been wonderful. The outpouring of love. The offers of assistance. The stories of survivors. The friend who did a half marathon over the weekend, then texted to say she brought me across the finish line with her. Even people I have always felt don’t really like me have reached out and made me smile. The “moms” at the bus stop yesterday were great. One shared with me her moms breast cancer survivor story. One brought me dinner. The other told me all summer long she is going to fill me up with fresh organic veggies from her garden. The neighbors who are teachers and will be home all summer offered me child care, and a lounge chair poolside.

The care package that I got from www.pabreastcancer.org. Go there and click on the friends like me link. They sent a package with a yoga DVD, one of those “chicken soup” type books filled with stories of survivors….I may just be able to read again. Bracelets. Pink ribbon pins. A tree ornament made by a girl scout. Tons of info pamphlets about support groups, financial assistance, how to talk to your kids about cancer. And most importantly, a pink T-shirt that says “SURVIVOR” on the back. Oh, God! I can’t wait to wear that.

I am coming to terms with this. This is me. No one is going to call and say “woops, we messed up. Accidentally switched your films and biopsy with someone else.” And here is a truth: if God himself came down from the heavens and offered to take this away from me, but then I would have to choose who he gives it to because someone has to have it, I would keep it. There is no one I would wish this on. So I really need to follow my own advice and put on my big girl bra….and I am trying to do just that. It’s hard, but I’m trying.

And even tho yesterday was a good day, I know that not all days will be so good. I figured that since it was so good I would sleep well, without pharmacological assistance. I was wrong. I slept terribly. And today I go back to the Plastic Surgeon and I don’t look forward to that. Because each appt. I have just makes this more and more real.

 Yesterday I spoke to Jane and she said my MRI appt. was cancelled. Thankfully. I wasn’t looking forward to that. On May 9 I meet the oncologist who will be in charge of my chemo. On May 11 I meet again with Dr. Chung to sign the consent for surgery forms. I told Jane there were a few things I needed to do before surgery and one of them was to go to WV this month as planned. She told me to go, and have fun. Another week won’t kill me. The other was to use my sky diving Groupon. She said I should try to do that soon, before WV.

My life is going to drastically change after I come home from WV. And I  don’t really know if I am ready for it.

And then at the bus stop this morning, Michelle had a meltdown unlike anything I have seen from her thus far. A scratch on her leg that she is sure in cancer. She wants an MD appt. for a full check up. She went from being a little girl to being a puddle. She wants to curl herself up into a little ball and bury herself inside my bra. And I wish she could. I wish I hadn’t driven her to school at that point. I wish I had brought her home and buried the two of us under the covers with a big bowl of popcorn and some funny movies. I wish I could take her fears away, and convince her that I will be ok. But how will she believe that when to become ok I must first go thru hell?

It is time for my meltdown now.

This sucks.

Telling The Whole Truth

We told Michelle. The whole truth. It was hard but I had had such a good day and the burden of keeping this from her was overwhelming. I can’t help but wonder tho if by relieving myself of this burden if I was hurting her. But she has been angry, and sad. And that is manifesting itself in many ways. So tonight I gave her a pencil and paper and asked her to draw a picture of my cancer; however she thought it would look. So she did. Then I gave her a sharpie pen and told her to “kill it!!”, and I really don’t care that now there is sharpie pen marks all over my kitchen table. Then she crumpled the paper up, stomped on it and threw it in the garbage yelling “GO AWAY CANCER!! GO AWAY!!” I can’t help but believe this was a good thing for her.

She is understandably sad. We tried to put a positive spin on it. Told her I would get new breasts, and a wig till my hair grew back. She worried about the summer and we agreed with her that it wouldn’t be a great summer but reminded her of how many more summers we will have together. Then, of course, I emailed her teacher. And I reminded Michelle that I have found her a therapist to talk to, and am looking for a kids support group for her. And that she would reallyreallyreallysoon have to get out of my bed and back into hers. “Life as normal” we tell her, but nothing feels normal to her right now. And I get that. Nothing feels normal to me, either.

So once again she fell asleep next to me, holding on to my left arm, with dried up tears on her face. And with the promise that life will be good, that before my surgery she and I will spend a whole day together doing whatever she wants. Even if it means I pull her out of school for the day. Wanna know what she says we are going to do? Shopping at the Promenade. Bike ride. Rock climbing. Movies. That’s gonna be a long day. But it will be a good day.

Work

Today I had to go back to work. It’s part of my normal life. And I am one of those lucky people that actually enjoy going to work. Even when I have a bad day at work, I still have a good day. I’m a home care nurse, so for the 8 hours that I work, it’s just me and my client. I have all day to assist him with whatever he needs, and I am honored to so. I get to use the knowledge and skills I have spent years perfecting to make someone else’s life more bearable. My client is awesome and for the two years I have been with him we have formed a great bond. We are friends. We love each other. And I could spend days telling you how wonderful he is, but there are HIPPA laws I must adhere to. I can say this tho: like my step-daughter Mary, looking at him helps me put my troubles into perspective.

The only downfall of my job is that it is physical. Sometimes that is a good thing. Other times, like when I had elbow surgery, it’s a bad thing. I can’t perform my expected duties if I can’t use my upper body strength. I needed to take six weeks off already this year to allow my elbow to heal. I needed to take two days off a few weeks ago because of the two breast biopsies I had. Because after a biopsy you aren’t allowed to lift, push or pull for 24 hours. I needed to take off last week because of MD appts. I will need to take off a day and a half next week because of MD appts. Which wouldn’t be so bad, if I worked full time, but I don’t. I work two, maybe three days a week.

So that sucks.

And now I am going to have a double mastectomy. And I really doubt I will be able to lift, push and pull for a while after that. Then I will start chemo and I have no idea how that will affect me physically. I know someone who has the same type of job I do and when she had chemo she worked full time and didn’t have terrible adverse reactions. I know someone else who had chemo and became severely anemic. Her bones ached. Physically she felt horrible. So how will I react? Will I put on my big girl bra and say “I can do it?” Or will I spend that time hiding in my room listening to the sounds of summer pass me by.

Which is another thing that really pisses me off. It’s just about summer time. Summer is my season. I love summer. I love the outdoors, I love the lake, I love the mountains, I love the pools, I love the river, I love my kayak. I love the BBQ’s, the beer, the back yard spontaneous get togethers. I love to watch Michelle enjoy summer. I love to smell the scent of chlorine, sun block and sunshine on her. I love when I smell like those things too.

And I know I shouldn’t complain about it. It’s just one summer, I will have plenty more. But I can’t help it. I love summer. And I had plans already for this one. And now I don’t know if they will come to fruition. And then not only will I be pissed off, but Michelle will be too. She is too young to truly understand, she might “get it”, but she won’t really understand. A crappy summer will break her heart. So I will break her heart.

Tyler and Mary

Those of you who know me know I have two step-children. Tyler is 22 and on his way to becoming a respectable young man. He no longer lives at home but comes by now and again to hang out. And eat. Mary is 18 and spends one week with us and one week with her mom. She is a special girl with special needs related to an accident she was in almost 10 years ago. To put it into perspective, what I am going thru now is horrible, but it will end someday, on a happy note. What Mary is going thru now is horrible and will follow her throughout her life.

Alan and I decided to tell Tyler and Mary this news yesterday. Separately. We wanted to explain it to Mary in quite the same way we explained it to Michelle, and not tell her yet about the mastectomy and chemo, to give her time to process this info without putting her on overload. She handled it well and immediately got on the web to find me the right treatment. Mary would do anything she could to help anyone.

We treated Tyler like the young man that he is. Actually, I sat down alone with him and told him. It’s so hard to say those words out loud “I have breast cancer.” I didn’t hold anything back. He knows everything we do. And I directed him here to this blog also, in case he wants to get inside my head. And he likes that getting inside other peoples head stuff. And he respects the written word. We may not be related by blood but we do have that in common. He took it well and gave me the best hug I have ever gotten from him in all these years. And I told him he had to come mow the lawn this summer.

So now everyone knows. Except for all those people who don’t. Those people who live on the periphery of my life. The people I like well enough but don’t really know. The “mom” friends. The folks across the street. You know, those people. And I really wish the news would spread so I don’t have to say those words again.

How Are You

How are you? This is a question multiple people ask you multiple times a day. And you ask multiple people this question multiple times a day. And even if you are having a kind of crappy day you find yourself smiling and saying “I’m fine.”

Recently I have begun to hate this question. From the guy at WaWa, my family, my friends, my medical providers, my every one. I especially hate it when the person doing the asking has a sad look in their eyes. Because that person knows how I am doing. So really, why are you asking?

You wanna know?

Last night was the first night I slept thru the night. The first night I slept more than 5 hours. But before I went to bed I had one Xanax 0.25mg and two Tylenol PM.

I can’t read. I love to read. But I can’t do it right now. Because I can’t concentrate.

I like to play Words With Friends on my smart phone, but I resigned all my games. Because again, I can’t concentrate.

I have a pile of mail 3 inches high. Some of it is bills. And I don’t care.

I can’t speak very well right now. Sometimes I can, but most times I start to cry.

I can’t eat. I’ve lost 4 pounds. When I can eat it’s oranges, grapes, watermelon mostly. Very little real food. I know I need to eat, I just can’t. I can’t keep it down.

I cry when I drive. Out of nowhere.

I can’t sit still but there is nothing I want to do.

But Alan says that now that we have made a decision I can at least say “today was a pretty good day.” And I guess I can say that.

 Sometimes it might even be true.

Genetic Testing

Today I had a Cancer Risk and Genetic Assessment done. This involves a long talk about your family history; ages, illnesses, cancers, deaths. It’s a very involved process. Interesting too.

But it all boiled down to one vial of blood. And that vial of my blood is now being sent to a lab in Utah to see if I have the BRCA 1 and 2 genetic deformities in my DNA. We all have the BRCA genes. All of us. Men and women. Some of us have deformities to it. And in about 2 weeks I will know if I do.

So the info I am about to share is what I learned today, to the best of my knowledge. I have pages of notes that I took while I was there but that doesn’t mean that I am 100% accurate in what follows.

There are three different results I could get from this test.

1.       I could be BRCA +. That means I carry a hereditary gene that causes breast cancer. So, just because I have breast cancer doesn’t mean I have that deformity. If it is positive, it will be suggested that I have my ovaries removed. Because our ovaries produce estrogen and my estrogen is behaving badly. If it’s positive they would suggest my mom get the testing too. Her ovaries were removed at a young age so it’s possible that she has avoided breast cancer due to a BRCA deformity because of that. If she is positive then it will be suggested that my brother (yep, a man) be tested (he could be a carrier…and then so could his son….and his….and it’s also linked to other cancers too, like prostate), and all the women on her side of the family. If her test was negative then they would suggest that all the women on my fathers side of the family get tested (funny, I don’t remember her saying my father should be tested). If I am positive then they would suggest that Michelle get tested at the age of 18. And then start regular mammograms at the age of 29, 10 years younger than the age her mother was when she got diagnosed with breast cancer. If I’m positive my risk for a second form of breast cancer goes up to 64%.

2.       I could be BRCA -. And if that’s the case, then my genes didn’t cause this cancer. And I will never know what did. Malfunctioning cells, I suppose. And my risk for forming another type of breast cancer is the same as the general populations. But they would still suggest that Michelle start breast screening at age 29.

3.       The results could come back as “Variant of Uncertain Significance”. This happens to <3% of the population. As a side note….you know that saying “bad things happen in 3’s”? Ok, 1, some of you know about the elbow surgery I had in January. They found a muscle in my elbow at that time that only 5-8% of the population has. 2, I have a form of breast cancer usually found in post menopausal women. And 3, well, I think that’s going to be this weird variant. If it did come back as this, there is another test called the BART test. I don’t know what those letters stand for but I know that I don’t meet the insurance companies two guidelines for having this test. I would need to have been diagnosed with breast cancer under the age of 50. Which I was. And I would need to have 2 or more family members who have been diagnosed with either invasive breast cancer or with ovarian cancer. Which I don’t. And this test is upwards of $700. So nothing like the man making it easy for women to take care of themselves, huh?

Here is something I wrote real big on my notepad: Having a double mastectomy removes 95% risk of another breast cancer!! Unfortunately I don’t know if that is a general statement or if that would be with a positive or negative result.

Either way, it reinforces my decision.

And I was told that often women with a family history of breast cancer who have this genetic testing come back positive often remove both their breasts prophylactically, and not because they have breast cancer.

And that also reinforces my decision.

And while I ask you to respect my decisions I will respect yours too. But let me be Jane here for just one moment. If breast cancer is in your family and the worry that you may get it is always in the back of your mind, go get this test. Even if you don’t really know your family history. Go anyway. I bet you could get this test and then just hold on to the results until when, and if, you are ready to find out. At least it’s there. I'll go with you and hold your hand.

I did this test for me. Not because I have breast cancer but because if it’s positive I want to have my ovaries removed.

And I did it for Michelle. So she can be prepared with the knowledge she needs as she becomes a woman.