Category Archives: breast cancer

Same Chapter…

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The Same Chapter…Different Take

This past Wednesday was just another routine oncology appointment. Into the exam room walked a very dapper White Russian. I’ve only ever seen him in his white coat, but the other day he sported a yellow v-neck sweater, a navy and white checked shirt and a yellow tie with stripes in various shades of blue, all wrapped up in a natty tweed blazer. I commented on his Soviet swag, to which he replied he had lost weight and his coats were too big. He was waiting for his order of new coats to come in, but had gotten so many compliments that he was thinking of cancelling the order.

Once the fashion discussion was over we got down to business. And he started the real conversation with, “There was a study…”

I really hate those words. They usually don’t bode well for me. Which is ridiculous because the reason I and my mother and countless other cancer survivors are healthy and/or alive is because there was a study. But the last few times I was told there was a study it meant something I had been working for, something that was at my fingertips, something I was happily looking forward to was yanked from my grasp.

Here is the opening paragraph of a press release regarding this study from the San Antonio Symposium held in December:

SAN ANTONIO — Ten years of adjuvant treatment with Tamoxifen provided women with estrogen receptor-positive breast cancer greater protection against late recurrence and death from breast cancer compared with the current standard of five years of Tamoxifen, according to the international ATLAS (Adjuvant Tamoxifen — Longer Against Shorter) study.

You can read the whole press release HERE.

Basically it says that there was a decrease in recurrence and/or death rates in the second decade (10 to 14 years) after diagnosis for women with estrogen receptor positive cancer who remained on Tamoxifen for ten years instead of five years.

The White Russian went on to tell me that his daughter is a fellow at Sloan Kettering in New York and their team determined (as is also mentioned in the press release) that this practice should extend to all adjuvant hormone therapies, i.e., Arimidex.

I’m not sure if it was my expression (I am happy to report I was not about to burst into tears, however I bet there was a “you can’t make me” look on my face) or if he really wasn’t sure this was the right course for me, but we talked about it at length. When I told him I often wondered if my issues were side effects or just a matter of my age he told me that I’m too young to have these issues. He also said that quality of life is sometimes more important than reducing a recurrence by a couple of percentage points.

This is a great example of why I am so fond of this doctor. Where I tend to downplay my discomfort and fatigue and myriad other annoyances, he justified them as real and life-altering problems that I shouldn’t be forced to deal with if I don’t have to. Well, that and when he said I was “too young”. I liked that part, too.

So we came up with a plan. I am no longer on the Arimidex and we’ll revisit this in six months. I wasn’t even disappointed that I have to go back in six months again, even though this was supposed to be my last six month appointment. It takes about three months for the Arimidex to be completely removed from the body. Hopefully I will notice a difference in the second half of these six months. If so then I will not go back on the medication. If there is no change I will resume the Arimidex for another three years.

Not entirely what I was hoping for, but I’ll take it. Now I’m just praying there will be a change. Not because I don’t want to go back on the drug – if these problems aren’t drug related then it doesn’t really matter – but because I don’t want these problems.

Once we satisfactorily concluded that whole discussion we went on with the rest of the exam. Which consisted mostly of us talking about our children and college and degrees and the like. He was very exuberant about Katie’s choice of Music Therapy for a degree and field, which I found interesting. This medical doctor – a hard science, bio-chemical type medical doctor – is all atwitter about this up and coming field. To quote him, “It’s been around for a while, but just in the past few years there has been so much literature about its benefits. It’s a really great field.”

The rest of the appointment was pretty routine, including the run through Starbucks for the obligatory White Chocolate Mocha for the ride home in rush hour traffic. I didn’t really want the drink, but there was no choice. The car automatically turns out of the cancer center’s parking lot and drives straight to the ‘bux without any concern for my own will. Really. I was glad for it, too, because it took me forever to get home. Never, ever drive from the general direction of Philadelphia at 4:00pm during the work week. Ever.

***

The second unexpected twist in this chapter came the following day when I spoke to a genetic counselor on the phone to get Katie set up for genetic testing. After a fairly lengthy conversation she told me that I was the one who needed the testing since I was the one who had the cancer. This seemed so contradictory to everything I thought I had been told, but her explanation made perfect sense. If I test negative for the BRCA gene we will know my cancer was not genetic, which means there is no reason to test anybody else. If I test positive, however, then others in my family may wish to be tested as well, i.e., Katie, Taylor, my sisters, etc.

My thought (though obviously my thoughts are not to be trusted) is that this is not a genetic cancer. My mother’s breast cancer was protein positive/ hormone negative and mine was the exact opposite. Most likely if it was a genetic thing we would have had the same tumor make up. The counselor confirmed my thought process, though it’s still not a sure thing.

So in a week and a half I will be meeting with her at 8:00 in the morning -I should have asked if I could bring coffee because, well, you know. It’s me we’re talking about and 8:00 in the morning is early when you have to be clean and presentable. – to go over an in-depth family history and all the fine details about my cancer, my mom’s cancer, etc.

***

To close out this post I want to tell you about an event I went to the night after I wrote The Next Chapter. It was a community night of prayer for some of our local families. One family in particular is a preschool and church family and they were given a devastating blow this past September. Their third child, Eli, was diagnosed with Metachromatic Leukodystrophy (MLD) – a horrific degenerative disease with no cure. MLD is genetic and it was passed on to him by his unsuspecting parents. They then had the other three children tested and while the two older boys are carriers and don’t have the disease, their preschooler, Ella, does have the disease.

As I sat there listening to their mother, Becky, I thought how petty my gripes of the previous day had been. I would take Arimidex, or chemotherapy, or anything every day of my life if it meant my children wouldn’t have to suffer. The heartaches I have been through have no comparison to what this family has been through and will continue to endure. But what faith and strength Becky has. You can read about it at her blog, Fear Not. 

***

As for this chapter, maybe I should stop trying to figure it out before I’ve finished reading it and just let God do his thing.

The Next Chapter

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The-Next-Chapter-1-470x264

I am staring at a new chapter of the cancer chronicles. It’s not a bad chapter, precisely, but it has me feeling a little uncomfortable. Or maybe restless. Or maybe I just don’t know what it is I’m feeling.

Next week I see my oncologist for my last biannual appointment. That is a great thing. I am nearly 8 years out from diagnosis and over 7 years since my first No Evidence of Disease report. That is a survivor’s dream.

There are only a few days left of my Arimidex and I won’t be refilling the prescription. Two years of Tamoxifen followed by five years of Arimidex and I’m finally done. The original plan was to be on post-chemo drugs for a total of five years, but somewhere around year four a study indicated that it was best to stay on the Arimidex for five years regardless of how long Tamoxifen had been taken. That was a huge disappointment at the time (worthy of a few tears), but the extra two years are done and I can finally stop the Arimidex.

Earlier this evening I was reading stories from women who had gotten off the Arimidex and how their lives were improved. More energy, weight loss, decreased stiffness and pain, slight reversal of some menopausal symptoms… all things that I deal with to some extent.  I want to be excited about the prospect of a better quality of life, but I’m afraid to. I am 47, after all. I’m not supposed to have as much energy, weight loss is supposed to be more difficult, stiffness and pain are just a part of growing older and menopausal symptoms are what you get when you’ve had your ovaries removed, right?

So what if I don’t notice any difference in any of those areas after I stop the medication? What if all my “symptoms” are just a result of my age?  I can tell you right now that if there is no improvement I will be just short of devastated. And incredibly furious. Again. The injustice of cancer has a way of causing righteous anger even still.

I was talking with two of my co-workers today and I told them that I don’t want to be a “new” me. I just want to be the old me. The me that I was at 39. Or more specifically, the me that I would be today if I hadn’t been derailed by the monster. Of course, I have no idea what that me would be. I just know it wouldn’t be the me I am. But maybe I’ll be much closer to that me after I stop the Arimidex. I guess time will tell.

There’s more to this chapter than this, though, and it goes beyond my own personal battle. This afternoon I started the process to get Katie genetically tested. When she was about 13 my oncologist told me that I would want her to be screened when she was 18 because some of her life choices would depend on whether or not she was genetically disposed to breast cancer. At the time 18 seemed so far away.

It hurts my heart that I’ve done this to her and Taylor. We don’t even know if this is genetic, but just the fact that Katie (and possibly Taylor) has to go through the testing is more than I think either of them should have to go through. I feel responsible and guilty and I’ve never been one to feel guilt over much of anything.  But this? I want to heap burning coals upon my head. Even though I know it’s not my fault. And yet…

I know I’ve said this time and time again over the past 7 years, but I really thought once I was through with treatment and reconstruction everything would be normal again. What I have found is that cancer has a ripple effect and I will never be completely free from it.  And sometimes that’s exhausting.

But then I remind myself that I don’t have cancer and I am healthy, quirky aging and/or side-effects aside. Even more important is that my children don’t have cancer and they are healthy. I have a husband who adores me, kids who love me, great family and friends and I am happy.

So next week I’ll go see the White Russian and he’ll say how great I’m doing and he’ll send me for a dexascan to see where my osteopenia is (that will hopefully eventually be reversed since I’m stopping the Arimidex) and then he’ll tell me that I don’t need to come back for another year (which will make me happy and sad all at the same time). And sometime soon Katie will go get tested to see if she has the BRCA gene (which I don’t think she does) and she can then make the educated choices that a young woman needs to make.

And then I can move on to the next chapter.

 

Down To The Wire

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Today was my bi-annual follow up appointment with the White Russian. In a nutshell, I’m fine. My blood pressure was a little high, but it was probably because I was worried about not getting there on time. I left work about 30 minutes later than I had planned with an admonition from Terri not to speed. I may have lied and said, “Okay. I won’t.” Which is a bad thing to admit for anybody, but it seems especially horrific for someone who: a) works for a church; and b) is talking to one of the pastors. Lightening didn’t strike, though, so…

And depending on one’s definition of speeding I may or may not have actually done so. 

Definition 1: Exceeding the speed as indicated on those little signs on the side of the road.

Then yes. I sped.

Definition 2: Going faster than every other blessed car on the freeway who happens to be going 10 miles an hour over the posted speed.

Then no. I didn’t speed.

Regardless of whether I sped or not, I did make it to my appointment on time. I’m getting really tired of their efficiency in that office. I never get to read even a paragraph of my book before they’re calling me back or the doctor is coming in or whatever. Very disappointing.

When he did come in he asked about the kids and how Taylor was liking college and what he was doing this summer and if Katie knew where she wanted to go next year, etc. I was almost offended because, you know, it’s supposed to be about me. Everything is supposed to be about me. When will people learn this?

Anyway. Back to me.

The plan is that I have six more months on the Arimidex and then another year on the Fosamax. Well, hopefully only one more year on the Fosamax. It will actually depend on whether or not I start building bone again after I stop the Arimidex. Bottom line, however, is that we don’t want me to be on the Fosamax for much longer. I’m not worried, though. I have a plan…

But I’m going to save that for another day.

So I go back in six more months (February), at which time I will have been on the Arimidex for five years plus the two years on Tamoxifen. The current recommended standard of care. Of course a little over three years ago the recommended standard of care was five years total of any combination. If I go back in February and he tells me the recommended standard of care has changed again and I need to stay on the Arimidex for another allotment of time I think I will respectfully decline. But again, that’s a post for another day.

Unless something has cropped up between now and February – and there’s no reason to think anything will – I will go from seeing him every six months to only once a year. I’m not sure how I feel about that.

Not true. I know exactly how I feel about that. I’m not happy about it. For one thing, I like being followed so closely by an oncologist. My risk for a recurrence or metastasis is very slim. My risk of a new cancer is only slightly higher than the average Joe simply because I have a history of cancer. So it’s almost like being followed by an oncologist is an unfair advantage. An unfair advantage that I like.

But the other reason I know I’ll be disappointed to have my visits reduced is because I genuinely like the staff. I really do look forward to seeing them.

Let me be honest though. I would much rather whine and complain about not being able to visit the oncologist more than once a year than have to go once a week, which is what the alternative would be.

After the appointment I drove down to Starbuck’s for my obligatory post-oncology follow up treat. But this time I changed things up a bit. I got a grande mocha cookie crumble frappuccino.

Mocha Cookie Crumble Frappuccino

Coffee blended with mocha sauce, vanilla syrup, chocolaty chips, milk and ice, and topped with chocolaty whipped cream and chocolate cookie crumbles.

  

It was yummy. Really yummy. But I probably won’t get one again just because it was a little too ice cream for me. Don’t get me wrong! I am not against ice cream. At all. I just have certain Starbuck’s expectations and this did not meet my typical criteria. But again, it was very delicious!

I guess I should add that I will miss the obligatory post-oncology follow up treat.

But I’m pretty sure I’ll learn to deal.

Seven Is A Perfect Number

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Jewish tradition declares the number seven is perfect. So today I share seven thoughts.

1. Seven years ago today I woke up with butterflies in my belly because of what the day held for me.

2. Seven years ago today the surgical waiting room at Baptist Hospital in Little Rock was overrun with people praying for me, laughing and telling lies exaggerated stories about me and eating my peanut M&Ms.

3. Seven years ago today I sang “I Want To Be Sedated” as the attendant and nurse wheeled me into surgery.

4. Seven years ago today a cancerous mass, my left breast and several lymph nodes were removed from my body.

5. Seven years ago today somebody stole the breast cancer awareness car magnet from my van in the hospital parking lot.

6. Seven years ago today I began an unwelcomed journey, but one in which I learned a lot along the way.

7. Seven years ago today I decided I would not be bested by something as evil as cancer.

It may not be a perfect list, but I sure do love being able to say I’ve been cancer free for seven years.

Crossposted at Mothers With Cancer

I’ve Got Something To Say

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I hate rocking the boat. I just want everybody to get along. There are some people who thrive on arguing but I’m definitely not one of them. I like serene, not confrontational. But sometimes I just can’t keep my mouth shut. I try. Oh boy do I try. I slap both hands over my mouth and tightly squeeze my eyes shut and try to avert the bomb that’s getting ready to disengage.

This whole Susan G. Komen/Planned Parenthood debacle is one of those times. I’ve stayed quiet (mostly) but the myriad of comments I have read these last few days have distressed me to the point that I cannot remain silent any longer.

There has been so much vitriol spewed by both sides of the fight that the important stuff has gotten lost. If you are pro-choice you can’t begin to understand someone who is pro-life. If you are pro-life you can’t fathom why someone thinks that abortion is okay. And this has clouded everything.

These fiery feelings have lead to false statements and ridiculous accusations and a lot of hate. It all makes me tired and frustrated and sad that people who were at one time part of a common goal (breast cancer issues) are now divided and hurling hurtful and caustic abuse at each other.

Below are just some of the comments I’ve read from both sides of the debate that make me want to scream. I have countered with what I believe to be rational, factual responses with maybe a little bit of opinion thrown in here or there for good measure.

Let me make this clear. I AM NOT PROMOTING SUSAN G. KOMEN OR PLANNED PARENTHOOD.

This is despicable, and I’m going to silently curse every time I see one of those stupid pink ribbons. Whatever they may have meant in the past, they now stand for “Let ‘Em Die.”

Why? That’s one of the most ignorant statements I’ve heard. Pink ribbons do NOT represent Susan G. Komen. Pink ribbons represent breast cancer. Orange ribbons represent leukemia. Teal ribbons represent ovarian cancer. You get the idea.

I find this statement hurtful and terribly offensive. While it’s true that I have become weary of all the pink hype, the ribbon still means something to me and to my family. It serves as a reminder to women that they need to be aware and proactive; it serves to inspire hope in those newly diagnosed; it serves as a badge of honor for those who have fought the fight; it stands as a memorial for those we’ve lost – and we’ve lost too many. And to me personally it represents thankfulness that research has come as far as it has and gratitude to all the people who have made that possible with their financial support and the organizations who have advocated for that research.

If SGK will no longer give grants to PP then I will give my donations directly to PP.

You can give to whatever charity you want. That’s your business. But here are a few of my thoughts:

1. Donations to SGK are specifically related to breast cancer. The funds are then divided into six separate categories: administration, fundraising, research, education, treatment, and screening. When you give money to SGK you have no idea what your money specifically is going to, but you do know that it has something to do with breast cancer. By the same token, if you redirect your donations from SGK to PP you have no idea if it will be used for breast cancer screenings. My point here is, if you have been donating specifically for breast cancer something and you’re disenchanted with SGK then donate to a different breast cancer organization or a local facility.
2. PP is not the only organization who gives free breast cancer screenings. In fact there are probably better options simply for the fact that PP offers only breast exams and not further diagnostics such as mammogram and ultrasound. Which means if a woman has a breast exam at PP and something is found, she’s going to have to go somewhere else from there anyway. There are any number of programs for uninsured and underinsured women who offer both screening and diagnostic testing.
3. Just like it’s your right to give your money to whichever charity you want to, it’s an organizations right to give their grant money to whichever research or community health agency they want to.

I will not donate to SGK anymore because they now pay for abortions.
They don’t pay for abortions. They provide funding so a woman with no insurance and no money can get a possibly life saving breast exam. Unless there has been a misappropriation of funds (and I know all about the investigations), grant money is never used for abortions. There is nothing to actually suggest this has ever happened at PP.

That said, if you’re uncomfortable donating to SGK because there’s a chance your donation will help fund abortions, then by all means, donate somewhere else. But please don’t accuse SGK of funding abortions.

I thought SGK was in the business of saving women’s lives, yet they’re partnering with PP and abortions cause breast cancer.
Forget pink. This one makes me see red. There is no scientific evidence to support that claim. Here’s a link to the American Cancer Society which, unless you’re a conspiracy theorist, is in the business of cancer facts. FACTS. http://www.cancer.org/Cancer/BreastCancer/MoreInformation/is-abortion-linked-to-breast-cancer. It’s true there are studies out there which claim to show a link, but their stats are unreliable due to a whole host of reasons which are explained in the ACS link.

This is a real hot topic button for me because when my mother shared that I had been diagnosed with breast cancer with a long time family friend, the first thing she asked was if I had had an abortion. Understandably this floored my mom. When I learned about it I was enraged. First – because it’s the height of rude tackiness. Second – because abortion does NOT cause breast cancer.

If we could find a cure for polio, we can find a cure for cancer.
That is the hope, but to compare polio and cancer is like comparing apples and orangutans. Polio is one virus. One as in singular. Cancer is a mutation of cells and the reasons, causes, triggers, etc. are different for each type and subtype. Not to minimize polio, but it was one cure. Cancer is not that cut and dried.

There’s a cure for cancer. It’s just being kept secret by the pharmaceutical companies, government and organizations like SGK because cancer is such a big money maker.
Really?

SGK’s administrators take too much in compensation. All they care about is making money.
Well… It kind of seems that way to me, too. A friend of mine pointed this out to me, however:

Just an FYI – most directors of big charities get paid big bucks. When charities reach the size like Komen, they are incredibly difficult to administer, not to mention the compliance required to maintain its non-profit status. When you think about all the different tax jurisdictions where Komen has a presence, just making sure all the ‘i’s’ are dotted and ‘t’s crossed to prevent having the 501(c)(3) designation from being pulled is a huge job. The person in charge really needs to be a non-profit expert in compliance. This is highly specialized and demands high pay. Another thing to consider is that certain people get paid highly because they are able to use their connections to bring in many more dollars than otherwise would have been received by the charity.

I think what it comes down to is this – to the average person their salaries are over the top. However, that is an opinion and is relative to each person. Eddie pointed out further:

You will hard-pressed to find CEO’s at companies the size of Komen making less than a million dollars. And, not-for-profits have all the issues that for-profits have PLUS all the non-profit compliance issues.

Only 40%/28%/12% of the donations go to actual charity. The rest goes for administrative costs.
I’m not sure where people were coming up with these numbers, but they’re very inconsistent and way off. According to Charity Navigating (an objective third party who rates charities), 80.5% of what they bring in goes to research, education, screening or treatment. That might not sound like a lot, but when you look at other charities of a similar size that’s pretty much on par.

Planned Parenthood’s PRIMARY mission is to provide low cost/no cost abortions. 75% of its funding goes to this exact purpose.
Not true. Regardless of your position on abortion, Planned Parenthood does provide other services – good services – and abortion is only a small portion of what they do. If you are opposed to Planned Parenthood that’s your business. But don’t skew the statistics.

There were other statements that I took issue with, but writing this post has exhausted me, taken all day, and I’m just done. As I said above, I am not endorsing or promoting either Planned Parenthood or Susan G. Komen and have actually kept my personal opinions regarding the two to myself.

Comments? Great! All I ask is that they be respectful.

Humbled

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The week before Thanksgiving, Ben, our Arts Pastor, asked if I would be willing to shoot a short video about my “year from hell” for an upcoming service. I agreed to do it and he said it would be after Thanksgiving. The theme of the video would be delayed answer to our prayers, for lack of a better description.

Now here is where I get real and honest and show you just how shallow I really am.

I don’t mind getting up on a stage and talking to people. In fact, I rather like it. I’m fairly good at it. It’s taken me a while to get the place where I can say this without feeling overly conceited, but this is an area where I’m gifted. Not that I’ve arrived or that I’m the best speaker ever, but I have what it takes to get there. Well, maybe not to be the best speaker ever, but you know what I mean. The thing is, when I’m up on the stage or in front of an audience speaking I don’t have to see me. I don’t even have to hear me. I can pretend I’m tall and thin and elegant or sporty and that I have a lovely voice. And I love the interaction with the audience.

Being videoed is a completely different game. For one, you have these cameras all up in your grill and these bright lights on you and these people telling you, “that was fine, but maybe you could say part A the way you said it before and keep part B”. When I get up to speak I am prepared. I’ve spent time writing out my talk and going over it, fine tuning it and getting it plastered in my brain. But for the video I had to take a year’s worth of prayer and pain and sorrow and condense it into 45 to 60 seconds. I so was not prepared.

The morning of the shoot I spent a little extra time on my hair and took my makeup and a freshly pressed shirt to work with me. Twenty minutes or so beforehand I went in the bathroom to get all made up and realized I had left my good foundation at home. My face was going to be shown on the huge screens at church and I had no good makeup! Before panic could set in I took a deep breath, closed my eyes and tried to focus on what really mattered. Not what I looked like or sounded like, but the message. This video wasn’t for me. It wasn’t to make people feel sorry for me or to make me look like a hero or a paragon of faith. It was to encourage others. It was to bring glory to God and his faithfulness.

With that thought in my head I finished my prep and went to shoot a video. Ben and Dave and Brett were so kind and gentle and very encouraging. It took a while to set up the cameras which was probably a good thing for me. It helped take my mind off any nervousness I was feeling. And then the filming began and I didn’t really know where to start. How do you boil such a year as we went through down into 60 seconds? Thankfully I didn’t have to.

Todd and I went to church the following Sunday like usual and I kept thinking they probably weren’t even going to show the video. I felt I had done so horribly and that there probably wasn’t anything salvageable out of the 20 or 30 minutes of video I shot.

The message, in a nutshell, was about persevering prayer – praying unceasingly for a miracle even when you don’t feel as though God is listening. Which is different than knowing God is listening. I always knew God was listening, but sometimes I grew so weary and it just felt like he wasn’t listening. There were also times when I was so distraught I couldn’t pray at all. I didn’t have any words. All I could manage was “Oh, God.” And that was enough because he knew what my soul was trying to say. Not only that, but I knew there were so many people standing in the gap for me, praying for me when I couldn’t pray for myself. What a comfort.

Anyway, I kind of digress. The message was very good and, I suppose knowing what my video was about, turned my thoughts to that year. I could feel my emotions rising and I’m not about emotions so I really just wanted to tamp them down. But then they showed the video. My testimony was shown in the middle of a song and I lost it. I closed my eyes so I couldn’t see it, but I couldn’t escape the sound. All the pain, all the sadness, all the uncertainty of my life six years ago surfaced and I sat in my seat with my head bowed, shaking and trying unsuccessfully to hold back tears. Todd wasn’t much better off than I was, but he had his arm around me, patting my shoulder. My friend, Tina, sat on the other side of me and patted my knee.

I told my story in front of these cameras with just the slightest of feeling. It was so mechanical in my head. This is what happened, this is what I did, this was the result. Done. But coupled with the message and the song it was just too much.

Dave did an excellent job of editing the video. And I just want to emphasize that, while sometimes it felt like I was praying to a wall, I always knew God was listening. I wondered what his plan was and wished he would let me in on it, but I never doubted.

I still don’t like watching the video purely from that shallow viewpoint I was talking about. If only I could have had a year to prepare and lose the weight. I have to keep reminding myself that: A) it’s not about me; and B) the camera adds 50 pounds (I’m pretty sure that’s right). So please know this is not easy for me at all to do and, in fact, is taking every ounce of courage I possess. But here it is. Be sure to listen to and/or read the lyrics. They’re very powerful.


Heart Like a Balloon

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Last night as I sat down to see what was new with my Facebook friends I whooped it up when I saw my friend, Shelley, hit her five year no cancer goal. I’ve known Shelley for what feels like forever. She’s the little sister of my junior high, high school, matron of honor, etc. partner in crime friend, Cathy. Two memories of Shelley from back in the day: 1. She could recite pretty much all of 16 Candles; and 2. She could do the entire “Thriller” dance.

I know exactly how she felt yesterday. You get breast cancer, you have surgery and go through treatment, you slowly get better and each time you have an oncology appointment you come away happy to know you’re not showing any evidence of disease. And then you hit that five year mark and your chances of recurrence or metastasis dramatically drop. You can see many more wedding anniversaries and children’s milestones far into your future. And, even though you hadn’t really been worried about it, you’re relieved and excited and happy and feel like celebrating. I’m pretty sure champagne was involved on the West Coast last night.

My heart soared.

As I continued to peruse the statuses I came upon one from a Mothers with Cancer associate. That’s when I found out another one of our writers, Judy, had been admitted to hospice. Judy was diagnosed with inflammatory breast cancer in December of 2007 and determined in remission the following year. Nearly two years later, November of 2010, she was found to have a recurrence and she fought it with everything in her. And there was a lot in her! A lot of faith, a lot of courage, a lot of strength and she wrote about her experience with so much raw vulnerability and authenticity that you couldn’t help but know, admire and love her. She also wrote about the fear and the pain and the sadness and her desire to be a mom to her young son and a wife to her loving husband.

My soaring heart plummeted.

This morning I found out that she passed away last night. I never met this woman in person and yet I feel such a strong connection to the women of Mothers with Cancer. Every time we lose one it’s like losing a part of myself and I daresay it’s the same with the other contributors. She leaves behind a devoted husband and a 10-year-old son – probably the biggest fear of a Mother with Cancer.

My heart now feels deflated.

MRIserible

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My last post was nearly a month ago. A lot has happened in that month:
• Katie went to prom – she looked beautiful.
• I went to Connecticut for a long weekend with three of my girlfriends – it was divine.
• Taylor got a job at Calvin Klein – not as a male model. Yet.
• We confirmed with an actual doctor that I have sleep apnea.
• We found out Todd has a SLAP tear (Superior Labrum tear from Anterior to Posterior) and will require surgery in July.

Finally, I’m writing a new post. Will I post pictures of my gorgeous girl all dolled up for the big dance? Will I regale you with tales of four chicks on the Connecticut shore? Nope. I’m going to tell you about my trip to the radiology department in Bryn Mawr this morning for my routine breast MRI. Why? Because it’s what I do. It’s how I roll. It’s my shtick.

Part One – The Drive:

Since everything in my life revolves around the weather that’s where I’ll start. After a few days of miserable, humid heat, we’re having perfect weather. Low-humidity-open-the-windows-turn-off-the-a/c-drive-with-the-sunroof-open perfect. So that’s what I did. If you know me at all then you know great tunes were also involved. Top the road-trip mode off with no traffic and you have what was a fabulous trip into Bryn Mawr.

Part Two – The Waiting Room:

Anne Murray was playing in the waiting room of the radiology suite. She was a favorite of my parents’ and when they played “Lay Your Head Upon My Pillow” it took me back and put a smile on my face.

Part Three – The Changing Room:

The nurse took me back to the changing room and told me to undress from the waist up and put on the cute little wrap-around shirt. She asked if I had snaps on my pants, which, of course, I did. So she brought me some scrubs to change into. Then she said, “Hold on,” as she left and came back with some snuggy socks. I was told to secure all my belongings in a locker and then sit in the green chair at the end of the hall. She also advised me to bring my book (Water for Elephants) with me because I might be sitting there for a little while.

So after I changed into my extremely comfortable outfit (and one I would have loved to stay in for the rest of the day) I ambled down to the green chair, started to sit down and she said, “Nope! I’m ready for you in here.”

Part Four – The MRI Staging Room (because I don’t know what else to call it):

This is the part where they ask you about your surgical history pertaining to mastectomies and reconstruction. I’m happy to say all that is far enough behind me to where I had to think for a second. Just a second, but trust me – that’s huge!

After all the questions they ask very apologetically if they can see your breasts. They have to mark every scar and mole and whatever else there is on a diagram for the radiologist. I told her I didn’t mind. It wasn’t all that long ago that I was flashing my boobs to everybody in a pair of scrubs or a white lab coat – which was fine when I was in the teaching hospital my plastic surgeon worked from. It was a little awkward when I was in the grocery store and a lab technician or nurse would turn down my aisle, but that’s another story.

She then jabbed my arm for the contrast line and I was all set for my MRI, but the MRI wasn’t ready for me. She got off her stool and rolled it under my feet, told me to get comfy and enjoy my book while I waited. So I did.

Part Five – The MRI:

I explained the experience pretty well in this post from last year – the massage table, the udders, the jackhammers – it was all still the same. Except this time I didn’t have a headache to start with and it really was only about 25 minutes. I did leave with a headache, though nothing like last year’s, so I compromised and treated myself to a Venti Skinny Vanilla Latte instead.

Part Six – The Ride Home:

Uneventful. I still had the great tunes and the perfect weather. Now I had a Vanilla Latte and a headache. They seemed to cancel each other out.

Part Seven – The Phone Call:

The radiologist called me and said, “I thought you’d want to know today instead of fretting through the weekend that your films look great. Nothing suspicious at all.” How incredibly unusual and nice was that?

Part Eight – Wrapping It All Up:

The headache grew in intensity, hit a crescendo and has leveled out to a dull ache. I wonder if it’s just the horrid, loud sounds of the machine or if it’s a reaction to the gadolinium contrast or both. Whatever. I don’t care. All I know is that I get another No Evidence of Disease report and I like it!

A Picture Is Worth A Thousand Words

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A few weeks ago I had a scare of epic proportions. I thought I had lost all my digital photo files from 2004 through 2008. That thought made my stomach hurt and my heart ache and I couldn’t concentrate on anything until my hero husband found them on a back up drive. Oh, how I love having a former IT guy for a spouse! After the photos were recovered and put in the home they belonged in, I spent a good portion of my day just looking through them.

In 2004 we took a great family vacation to Durango, Colorado and Taos, New Mexico and a few points in between. I cherish the memories of that vacation and I adore those pictures. My kids were 9 and 12 and I remember thinking how big they were at the time. Looking at their abundant smiles in those photographs I would say they enjoyed that vacation as well.

The pictures of my son from May 2005 through July of 2006 were a lot different. Looking through those photographs made me realize just what a difficult time that was for him. The smiles were a lot fewer and even when there was one it very rarely reached his eyes.

Taylor turned 13 the Saturday between my Wednesday diagnosis and my mastectomy the next Tuesday. A couple weeks before that he had been crushed when we told him we were moving from Arkansas to Pennsylvania. After all, when you’re in 7th grade you pretty much have your entire life planned and it normally does not include moving away from all your friends.

The following year was hard on everybody and maybe especially Taylor – a 13-year-old boy who only got to see his dad every weekend at best and whose mom had cancer. Not only that, but he knew once I finished treatment we’d be getting back to our original plan of moving.

Our family was blessed beyond measure during that year. We had so many people taking care of us, including friends who would come get my kids and take them to the pool or the movies or the water park or just to their house for some normal, ordinary fun. Katie had an awesome support system at school, Taylor had a great support system in his junior high youth group and both were bolstered on Sunday mornings and really, I think they both did a phenomenal job that year. They loved on me and took care of me and very rarely gave me any problems. But those pictures tell a little bit different story than what I perceived during that time.

I think it’s safe to say that the teenage years for any kid have their challenges. Add to those typical strains several life changes and it makes for a pressure cooker. So which is it the pictures reflect? Just the usual teenage angst or a kid with the world bearing down on him?

When we finally did join Todd in Pennsylvania after a year-long separation, Taylor was both relieved to be a family again and disappointed to move away. While his sister had made a friend practically before her feet ever hit her new driveway, his friendships took a little longer. But before too long he met a couple of guys in the youth group at church and once he started the 9th grade three months later, he met some kids at school. By the end of that first fall he told me he hoped Dad didn’t get transferred back to Arkansas because he really liked it here.

When I look at pictures from mid-2006 on he looks happy. His smile reaches his eyes. Five years later he’s a freshman in college and instead of the world bearing down on him, he’s taking all the world has to offer. Not only is he very happy, he’s fulfilled. He sends me and Todd texts just to say “I love you”, and when we get to see him (not enough to my way of thinking) he hugs us both like he’ll never let us go. I miss him terribly and yet I’m so full of joy and pride. What an incredible young man he’s turning out to be.

I won’t sugar coat it. That was a horrible year. As all the moms who write for Mother’s With Cancer will tell you, our ceaseless concern is what this life crisis is doing to our children. Don’t we all want to protect our kids and make sure they’re safe and happy? Unfortunately, life doesn’t always work that way.

I am proud of both my kids and have come to the determination that they are who they are not in spite of our catastrophic year, but because of it. Not that I don’t think they’d be spectacular individuals without that experience; however, I do believe it played a part in developing their character. While the pictures of a forlorn teenage boy break my heart just a little, the knowledge that he’s better than okay today soothes my soul.

Isn’t It Ironic

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Almost eight years ago I received a phone call from Diane, the sister of my very best childhood friend, Cindy. She called to tell me that Cindy had been diagnosed with breast cancer.  I fell apart. I’d never had a close friend with such a horrid disease and for it to be this woman who had been more to me than just my best friend, well, it was too much to take.  After I hung up with Diane I remember sliding off my chair and onto my knees, crying and trying to pray, but not able to say anything more than “Oh God”. That’s okay. He knew what my soul was begging for.

Cindy and her husband had been given the choice between a lumpectomy and a mastectomy and they decided on the mastectomy. After the surgery they were told the cancer was more involved than originally thought so she would have had a mastectomy anyway. She went through chemo and radiation and all the horrible side effects that accompany such treatment. Cindy had also recently been diagnosed with ciliac disease and her immune system was already suffering, compounding the problems that come with chemo.

Through all of it, though, she was the epitome of faith and grace, relying on God for strength and comfort. I remember talking to her and thinking to myself, I can’t imagine going through something so horrible and being so strong. She quickly became my hero.

Ironically, it was a little over two years later that I was diagnosed with breast cancer. I relied on my faith in God and always thought about Cindy and how she had fought the disease so valiantly and successfully.

Last Thursday as we were on our way down to Lynchburg, I received a Facebook message titled “Cindy” from Diane. It said, She was just diagnosed with breast cancer on her other breast. Please pray for her Jen!! So I did. And I am. And I will. Best case scenario it’s a new cancer and not a recurrence or a metastasis. The doctors seem to feel this is the case, but they won’t know for sure until her mastectomy on the 15th of October.

I talked to Cindy on the phone tonight. Several times, as a matter of fact. She lives in North Central Canada and was in the middle of her five-hour drive from Edmondton to her home. Apparently there are hills and valleys because we kept losing each other. When we were able to actually talk we mostly laughed. Laughed! The woman is going in for her second mastectomy in two weeks and we were cracking each other up.

What she did tell me, however, was that she has stage 3 breast cancer and at least one node is involved. As always, she won’t know the extent of treatment until after the surgery, but she’s not looking forward to chemo again. Thankfully treatment has gotten much better in the last 8 years so I’m very hopeful she’ll do better this go around. She’s also not looking forward to losing her hair again. But we laughed over the memory of her middle son telling her she looked like the trash man the last time.

Ironically again, it’s breast cancer awareness month.  Seven years ago October took on a new meaning to me because of Cindy. Five years ago it was because of my own journey. Four years ago it was my mom. This year we’ve come full circle. I’m aware. I’m VERY aware. I’m so aware that October used to be painful to me (you can read this post from 2007 to see just how painful.)

Treatment has changed significantly in the last eight years. As much as the commercialism of Pink October makes me squirm, I have to acknowledge that money raised really has made a difference. My hope and prayer is that these improvements will aid Cindy in breezing through this new diagnosis and that she’ll kick butt yet again!