This one’s for the walking wounded…

I’ve written this blog post a thousand times in my mind.

When it comes to putting it on paper, it never makes it. Something about putting all these feelings into words and onto paper makes me feel like a whiner, a complainer. Nobody wants to hear a bunch of negative stuff. We breast cancer “survivors” (and I really don’t like that word) are supposed to put a happy pink smile on it and keep going. For the most part I keep things to myself, but sometimes I just want to really say what I think and feel.

So I’m going to attempt to put these feelings into words, not just to whine and complain about the things I struggle with, but also because I think there are a lot of women out there like me who also mourn their life before cancer. Maybe they think they have to put a happy pink smile on it, too. It’s hard to do that all the time. So I’m going to give myself permission to be a whiner for a few minutes, and perhaps other women out there who feel similarly will know they’re not alone. They will know it’s okay not to put on the happy pink smile all the time. It’s okay to cry and mourn what used to be.

I admit that I am struggling with my post cancer life. I am struggling with side effects of treatment. I am struggling with how to handle my feelings about all of it.

I’m pretty angry about the fact that I am not the old Terri. Far from it. I feel pretty well from a health and medical standpoint, but I definitely can’t do what I used to be able to do from an athletic and physical condition standpoint. You all know how active I am, so that, for me, is a big deal. This downslide all started with chemotherapy, and now the tamoxifen I’m taking is wreaking havoc on my body. During exercise I get a feeling of being almost short of breath, and it makes me have to take frequent breaks. I feel like I’m on a constant stop-and-go. It’s pretty irritating. I have stopped running with others for the most part because I feel like I can only do my own pace, so if someone wants to run with me they have to do what I’m doing. I don’t ask people to do that. So I run alone mostly. I also firmly believe the tamoxifen is causing atrophy in my musculoskeletal system so that I feel as if no matter how much weight training I try to do I still get weaker. It doesn’t matter how much I run, I still feel weaker and get slower.

I believe the tamoxifen has also caused me to have severe anxiety. I used to take it in the morning, and I started taking it at night to try to combat some of the anxiety I felt it was causing. Taking it at night seems to help.

I also have terrible vaginal atrophy. If you don’t know what that is, you’re not alone. I can’t believe I made it to 50+ years old and never knew that many menopausal women suffer from this condition. When I was diagnosed with breast cancer, I was not in menopause at all. Tamoxifen blocks all the estrogen action in my body, and it made my body go into this drug-induced menopause, like cold turkey. No gradual decrease in hormones, just bam, no hormone action. The vaginal atrophy has been one of the most devastating effects of the cancer treatment that I’ve had to endure. And my doctors have been pretty insensitive to the problem, to the point where I left one doctor’s office in tears because she just didn’t get it. At all.

It’s an embarrassing problem to talk about. And I sincerely believe there are many women out there suffering with this problem who are either going through normal menopause or have had breast cancer treatment like me who are suffering in silence. We don’t want to talk about it. And if the experience of others is anything like my experience, our doctors aren’t too sympathetic. So if our doctors don’t even take us seriously, how can we talk about this problem openly?

Makes me mad as hell that we can have Viagra commercials on prime-time TV, but we women are suffering in silence with our own problems with sexual dysfunction.

So I’ve admitted to this problem to do my part to bring it out of the closet and perhaps encourage other women to do the same and seek help. I have found 2 local doctors here in Fort Mill who are helping me with this problem with a new treatment. These 2 doctors have been wonderful for me because they get it. They understand. They don’t minimize the problem. And I’ve had pretty good results with the treatment. Please send me a private message if you want to know more as I would love to share with other women that there is help available.

I’m grateful to be alive. I remind myself when I get discouraged about these things that I’m healthy for the time being. I’m only in the oncologist’s office every 6 months right now, which is pretty darn good. I need to enjoy this time because this might be as good as it gets. If my cancer comes back, I could be back in the oncologist’s office tomorrow and back on the intensive treatment cycle again. If that happens, I’m going to wish I was back to where I am today.

This is the life of a cancer “survivor.” Trying to be thankful for making it as far as we have but also dealing with the feelings and side effects of everything. It’s a daily challenge. It’s tough.

So I give you permission to take the happy pink smile off sometimes.

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Big milestone weekend…..

Two years ago on July 12, 2014, I ran Grandfather Mountain Marathon for the 4th time. I had a wonderful weekend with my running friends at the race and the post-race festivities. I stayed with my friend Paige at her wonderful mountain house for the weekend, and Don and I hiked Snake Mountain the day after the marathon.

I had spent the previous 6 months running a bunch of marathons and 50Ks, 7 in all since the first of the year. I was having a lot of fun and felt really strong and healthy.

The week after GMM I had a mammogram scheduled. A few days later I had a biopsy, and 2 days after that they called me to tell me I had breast cancer.

My life then came to a complete stop for about 16 months while I went through surgeries, chemotherapy, and more drug therapy. I had surgery and recovered. Had 2 more surgeries and recovered. Went through 4 months of chemo, all my hair fell out, and got progressively weaker and weaker and recovered again. Had another surgery and recovered again. Then I had to complete 6 more months of IV drug therapy.

This past weekend I went back to Grandfather to run the marathon once again. Since it was the last marathon I ran before my cancer diagnosis, I thought it was fitting that I should make it the first one I ran now that the cancer craziness has settled down and I’ve been able to run enough miles to make training for a marathon possible again.

I’ve been running a good many total miles in recent months but not very many long runs. My body does not seem to do those as easily as it used to, and quite frankly they’re just not as much fun as they used to be. I did manage to get in a couple of 18- to 20-mile runs, and each one had a lot of climbing, so I figured I was minimally prepared for the marathon. At least to finish in survival mode.

It was tough, and I was pretty wrung out the last 6 miles or so, but I finished my 5th Grandfather Mountain Marathon in 4:44 and some change. It was by far my slowest GMM ever, but I was glad to conquer the mountain and finish once again. This finish makes 37 total marathons/ultras that I have completed.

That makes 5 GMMs for me. I thought maybe I might hang up the hat after this one since the training was no fun. But I had so much fun at the race I feel sure I will return next year, God willing, for the 50th running of the Grandfather Mountain Marathon. I’m sure there will be some special activities of some sort to commemorate the 50 years, and I wouldn’t miss that for anything. It’s my favorite marathon of all the ones I’ve run, and I’ve run it more times than any other marathon. I love the challenge of the mountains, the beauty of the course, the laid-back atmosphere, the small field, the ease of parking and logistics before the race at the ASU track, all my friends who run the race year after year, and just all the other people that this race attracts. It tends to draw a different kind of runner, as you can imagine, and I dig the crowd.

I don’t think I will ever get back to running as many marathons/ultras as I was before my cancer adventure, but I think I enjoy the challenge enough that I will probably run 1 or 2 a year anyway. At least as long as I am physically able and I enjoy it. If it stops being fun, then I’ll move on to something new! There are always new things to do.

For now I thank God for a body that is healthy enough to run and enjoy being active. A healthy body is a huge blessing never to be taken for granted.

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What happened to the strong bald lady?

It’s July and almost 2 years since my cancer diagnosis. I look back to a year ago and think I was probably doing better then than I am now. This damn cancer has made me one of the walking wounded.

Physically I am doing well. I am sleeping well and eating well. All my blood work is normal. I am still running a lot, probably just as many total miles as I was before cancer. I just can’t run as fast or as far as I used to. My body just can’t do what it could do before. I’m sure getting older has a part in it, but I think probably all the cancer treatment has just affected me. For the most part I don’t let this bother me too much. But every once in a while I get a little angry that cancer robbed that from me.

We’ve had an awful lot of challenges in our family over the last year, and I haven’t handled it all that well. I think I handled all the cancer stuff better because it was just happening to me. About the only thing I had control over was my reaction to it, and I kept that under control pretty well because I don’t think I would have made it if I hadn’t stayed strong. I had to stay strong for myself and my family, so I did.

Now I find I am pretty much a weenie when it comes to any challenge whatsoever.  I crumble at the slightest hardship. What happened to the strong bald lady?

Someone mentioned to me that cancer survivors can be victims of PTSD. At first I brushed that off. But the more I think of it, perhaps there is an element of PTSD to my reaction. I certainly don’t want to compare my experience with someone who has serious PTSD, but I think I see some elements of it.

I’m still having a lot of issues with side effects from the tamoxifen I am on. I wish I could talk freely about them because I think there are many women out there suffering in silence with these same issues I am having. Perhaps if we brought them to light and talked about them openly, these issues could get some attention and we could get some help for them. I’m too embarrassed to talk about them. So I join all the others suffering in silence.

I recently saw both my PCP and my oncologist. I talked with them about these side effects. Neither of them were very sympathetic. They have pretty much told me I need to be on this medication and there’s not much they can do to help me with the side effects. I lamented to one of them something like, damn cancer, it’s taken many things away from me. She said to me, “Yes, but they got you all fixed up. It’s a small price to pay.”

I wanted to say, hey, wait a minute, I’ve paid a lot of prices. I think it was a pretty big price. Yes, I’m alive. I’m grateful for that. I’m grateful for all the treatment I’ve been able to receive. That doesn’t stop me from wishing I could be the way I was before. And I think I’m entitled to mourn that a little.

It’s been a couple of weeks, and I’m still angry about that “small price to pay” comment. I’m trying to take my own advice and cut her some slack. People don’t realize some of the things they say and how they sound. But man, that comment pissed me off.

I keep writing in this blog because I find that it helps me to be honest about the struggles I’m having. I get a little tired of going around pretending like everything’s okay. So this gives me an outlet to express these things without burdening people. I figure only the ones who want to hear about it will read, and those who don’t won’t read, so I’m not burdening anyone with my problems. I thank my close friends who are good listeners and let me confide in them.

Thanks for reading, friends. 🙂

Warning…….whining ahead…

I wish I could say life has been pretty normal around here. I haven’t had to go to the cancer doctor, or any other doctor for that matter, other than a trip to the ophthalmologist, so that’s been a huge relief.

But life just keeps on coming. Seems like as soon as one problem is over another one comes along. Or better yet, they overlap.

I remember writing in a previous blog that any day I didn’t have to go to the hospital or the chemo clinic was a pretty good day.

I guess it’s not quite as simple as that.

I’ve been a bit overwhelmed with life and all its challenges lately. I find I don’t have much to say in this blog because most of what wants to come out of my mouth, or my keyboard, is whining. And I don’t like sounding whiny. I know I have a lot to be grateful for, and I have wonderful people in my life. So this overwhelming desire I have to be whiny just feels so indulgent and selfish.

At the same time, I want to be real. Life is not easy. Sometimes things are hard. And I want to be honest about my feelings.

I was reminded recently by a young friend that a lot of people struggle with life and its challenges. I am not alone in this. My young friend wrote an extremely candid blog post about her struggle with anxiety and depression since her teenage years. (You can read her blog post here.) She reminded me that speaking out about our struggles resonates with others who have similar challenges. This allows us to realize we are not alone and also to seek support.

So with her influence, I am speaking out.

Life is not fun sometimes.

It seems the older I get, the more complicated life gets. When I was younger, I thought life would get simpler. Nope.

I am kind of tired of being so stressed out that daily functioning is difficult sometimes. I felt this way back when I was going through my surgeries. Once the surgeries were done, I felt somewhat better because at least I knew what to expect and what was going to happen. I knew I had to go through chemo. I knew I had to go through a whole year of Herceptin infusions. I knew I just had to put my head down and get through it. Just generally knowing what to expect helps.

When I have to deal with a lot of unknowns, I get stressed out. When I don’t know what is going to happen, I get worked up. When I don’t see resolution in sight, I start to panic. I find myself in this situation frequently nowadays.

The only thing I know to do is to get my Bible out, read, and pray. I get comfort from this. But I am still afraid. I know I’m not supposed to be afraid, but I am. I’m supposed to trust God. But I’m having a hard time with it.

I’m pissed off because I’m on this medication that has given me a lot of side effects that I have to deal with. It affects my hormones, and I have to believe this is contributing to my overall irritability and emotions. I just want to quit taking the crap, but that would be against medical advice, and I don’t feel comfortable with that.

The other ways I deal with the stress is to run a whole lot and read a whole lot. I am doing a lot of both of these things. I praise the Lord that my body can run because it is such a huge blessing. A friend of mine who is even more of a running fanatic than me was recently told he cannot run at all due to a medical condition. I’ve had my share of “medical conditions,” but at least I can run. Thank you, God.

I am reading a ton, and it is such good therapy for me. It’s a relief to be able to immerse myself in another world for a few minutes or hours and forget all that I have going on.

I think another thing I have in play here is that before my cancer diagnosis I was a pretty optimistic person. In fact, I had no idea just how optimistic I was until I went through that. The whole time I was being followed by radiology for my suspicious mammograms, I didn’t really worry about it much at all. The radiologist told me he thought it was okay, and I believed him. I went back to living life and really didn’t dwell on it too much. Me get cancer? Nah, not me.

I was wrong.

I now realize that yes, I can get cancer. Yes, bad stuff can happen. I don’t know why I didn’t think it would happen to me. But it can and does and just might.

So I have to learn to deal with this life stress. The older I get the more complicated life becomes, so I guess I better get used to it. In the meantime, until I figure out a better way, I will run, read, read my Bible, and pray.

My Oscar acceptance speech……

When I reflect back on everything that I’ve been through in the last year and a half, I am so grateful for all my family and friends who have helped and supported me. There are many whose support has been important to me and who went way above and beyond to help me. So many people brought me meals during chemo, and some of you brought me MANY meals. I had a few people bring me meals whom I had not even met before, but they heard about me and wanted to help out. So many of you sent e-mails and texts to encourage me. I got gifts like hats in the mail for my bald head. I got Edible Arrangements. I got flowers. I got a bunch of stuff! People prayed for me. There are many others of you who helped me, and I am grateful for your friendship. I am blessed.

I have to thank my family, who took great care of me and supported me through everything. Craig and Mom went to all my surgeries, waited for me, and took me home after. Craig made sure I ate, changed my bandages, helped me get a bath, and fetched stuff for me when I was lying on the sofa. Mom stayed with me after surgeries, cooked meals for us, did laundry, and came and stayed with me during chemo when Craig had to travel for work. Craig, Drew, and Jackson went to chemo with me. Kelsey sent me flowers, messages, and texts, which is a good thing because the boys aren’t too good at sending messages. My extended family sent cards and messages and visited. Thank you to my beautiful family. I love you guys so much.

Thank you to my Three Musketeers, Deb, Don, and Paige, my best friends. Deb, Don, and Beth were always bringing stuff over, food, flowers, gifts, meals. Deb and Don both ran or walked with me during treatment, always going at my pace, just to keep me company and spend time with me. Paige organized all the meals that people brought to the house, and she hosted me at her beautiful mountain home several times for relaxing weekend getaways. This was good time for me to get refreshed after going through everything. All three of these friends went to chemo with me. Thank you so much, guys, for taking care of me and being my friends. I love you guys.

Thanks to all the folks on my text update list. Thanks for caring enough to ask to be on the list, for wanting to know what was going on with me, and for praying for me.

My friend, Aprille, also brought many meals and let Craig and I enjoy her beautiful cabin at Leatherwood for a weekend during my chemo treatment. Thanks for being my friend, Aprille.

Thanks to Fredda for the many bouquets of flowers, your many texts and visits to the house, and the food. When something challenging happens for me, you always reach out and make me know that you care. And I know you do this for many in our community. Thanks for being my friend.

Thanks to the Rock Hill Striders – Luanne and Avery, Angie and Seth, Earl and Bonnie, Ed and Blair, Scott and Mary Ann, Hope and Jose, Erica and Todd, Jay and Leah, Don and Beth, Dan, Geary, Jeff, Ed, Katie, and Jennifer. You guys brought many meals and supported me with your positive words and inquiries about me. Luanne was always bringing me my favorite things from Panera, and she cooked us many fabulous meals including a particularly memorable roasted prime rib that was delicious! Angie brought me too many meals to count and was always texting me with positive words. I also could talk to her about my medical issues and get her advice and ideas. Thanks for listening, Angie. Ed Moore even missed his evening run one day to bring me a meal with Blair. I know what a sacrifice that was. 🙂 Mary Ann brought snacks to the hospital for every surgery so Craig and Mom wouldn’t be hungry while waiting. Everybody else brought meals and always asked how I was. Don, Angie, and Ed Kelly ran or walked with me on many a Sunday, sacrificing their own run to go at my pace. Thanks for being our second family, guys.

Thanks to my mountain running buddies for being my friends and for the gifts and messages. Thanks for treating me to a fun weekend at Black Mountain during my chemo treatment! Thanks Dennis, Lou, Doug, Martha, Beth, Beth, Phyllis, Don, Ed, and Alan.

Thank you to the many, many people in my community who brought meals for me after my surgeries and during chemo. This was so helpful for us. We were able to freeze many leftovers and, therefore, had even more meals to pull out for later. Many of you did not even know me beforehand, but you brought a meal to me, a stranger. Thank you. Thanks to my dear friend, Paige, for organizing all the meals. Thanks to my neighbors, especially Butch and Lisa Cowart and Ken and Lyn Evans, who brought meals, snacks, and took care of Carolina for us when we needed help.

Thanks to Fort Mill Fast Feet. I am not a member of your group, but many of you reached out to me and ministered to me with meals and words of encouragement. There were a few of you who did not even know me before this, but you reached out to me anyway. I thank you for your support and cherish the new friendships I’ve made.

I received many, many cards from people, and I thank everyone who sent them. They were always encouraging to me. I have to single out Mrs. Nettie Sibley from Fairfax who sent me more cards than I can count. For a while there I think I was receiving at least one card a week from Mrs. Nettie. Thank you, Mrs. Nettie.

I thank the people of Fairfax First Baptist Church and the people of Unity Presbyterian Church in Fort Mill for the cards and prayers. Your support meant a lot to me.

I’ve had excellent medical care, and I’ve had a lot of wonderful nurses and doctors who took care of me through everything. When you’re going through something like this, it is so comforting when people in the medical community treat you like more than just another patient. I know this must be hard for them as they see so many people with all kinds of problems. But I had a few medical providers who really showed their concern and care for me, and this really meant a lot to me. I have to single out my surgeon, Dr Corey Crain, who took such excellent care of me. He spent so much time with me in his office going over everything, explaining things to me, drawing me diagrams, etc. He would ask me how I was doing emotionally and how Craig was handling things (not many of the medical people ask this or even want to know). He called me personally on the phone many, many times to talk with me about the decisions we had to make. He did not delegate this to someone else. He called me personally. When he said he was going to call, he did. I didn’t do any waiting around because I was forgotten, like was my experience with some other providers. He welcomed me getting a second opinion if I felt that was necessary, and he called and consulted with other doctors about my case and then passed that information on to me in a timely manner, pretty much immediately. Dr Crain will always be special to me. There was also a nurse anesthetist at Piedmont who took special care of me. Before my mastectomy the nurses had difficulty getting my IV in. After a couple of attempts they quickly called in the “posse,” and I had several medical personnel around my bed that morning trying to get my IV in as painlessly as possible. This nurse anesthetist took charge of the situation and supervised getting the job done. I had to spend the night in the hospital that night, and she visited me the next morning, a Saturday, just to check on me. I appreciated her concern and care for me. This really stood out to me. I wish I had gotten her name so I could do a better job of thanking her. Also thanks to Deb, one of the nurses in the chemo clinic at Levine Cancer Institute-Rock Hill, who took care of me all throughout my chemo and Herceptin treatment. I saw Deb every 3 weeks for almost a year, so she got to feeling like family to me. I always knew I was in good hands with Deb, and she was always there with a friendly face and a hug when I needed it despite the fact that she was always working so hard.

I have had excellent support during my cancer ordeal, and I am grateful for all my friends and family. Thanks for getting me through one of the toughest times of my life. I’m glad to be on the other side of things, and I’m enjoying life!

Enjoy your life, too, friends. 🙂

Terri Marshall

“Everything happens for a reason.” Really?…..

I’ve been thinking a lot lately about words and things people say and how they affect me and others.

I’ve read several articles recently by people who have had cancer on the topic of “what not to say to people with cancer.” This usually includes a list of cliche-like things people say when they don’t know what else to say. Things that some of these folks find bothers them. They usually have a long list.

No wonder people sometimes avoid others when they’re going through tough times because they don’t know what to say. You never know what’s going to bother somebody.

Fact is, when you’re facing something upsetting in your life, doesn’t have to be cancer, a lot of things people say can rub you the wrong way. Just about anything can be taken out of context. And nobody else knows what you’re really going through, so they can’t truly empathize.

There were times when I was going through my cancer treatment that people said things that bothered me. Mostly these comments were related to them thinking my medical care wasn’t good enough. Which didn’t help me when I was in the middle of making a lot of hard decisions.

And then there’s that thing people say a lot. “Everything happens for a reason.” I don’t think anyone said that to me while I was in cancer treatment, but I remember someone saying it to me years ago after I had a miscarriage. And I didn’t find it helpful then.

I don’t believe that “everything happens for a reason.” I think we live in a fallen world, and shit happens. And shit does not always happen for a reason. As a Christian, I believe that God can work for my good in all things, including the shitty things. (Romans 8:28). That does not mean they happen for some reason or that He made it happen for a reason. Shit happens because this world is warped, but God can work good in the bad things. I know this as fact because I’ve seen it happen in my own life.

So I hate to add my own lecture to the “things not to say to people,” but here it is: Don’t say “everything happens for a reason.” Even if you believe that, it’s not helpful to others in the middle of something hard.

When I read those articles about “things not to say to people,” they come across so bitter. I don’t want to be bitter. I don’t want to be taking offense to everything people say. I am trying to make myself realize that most people really are trying to be helpful, even if they don’t say the right thing. So the key is to look at the heart. If the person’s heart is good and they still say something that bothers me, I can acknowledge that, let it bother me for a few minutes, but then move on quickly. Don’t dwell on it. The person did not mean it that way.

I need to work on the moving on quickly part.

I am not perfect. Others are not perfect. I need to work on letting things go. I really don’t have time to be stewing over petty things. Life is too short and precious.

Have a great weekend, friends!

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A final word on Pinktober…….

It’s the end of October, so I am going to have one more word before I step off my pink soapbox. If you’ve read my previous posts with my thoughts on Breast Cancer Awareness Month and the associated activities, I thank you for reading, especially if breast cancer is not an issue you feel especially connected to. I am going to try not to write about these issues again until maybe next year at this time, but I’m not promising anything. 🙂

I’ve already spoken about how I do not support Susan G. Komen For the Cure, mainly because of their minimal support for research, which is the only thing that will actually bring about the cure that is a part of their name. I have also spoken about how I think we’ve been sold the idea (and Komen has played a major role in this, too) that mammography is the answer to breast cancer, when, in fact, mammography has some serious negative consequences as a screening tool. I think we can and should look for better screening and not cling to old guidelines when they are proven not to be working. Once again, research is what can bring this about.

During October and even throughout the rest of the year, we are inundated with opportunities to support “breast cancer.” Many times we are asked to donate money, and very little information is given about where the actual money goes.

Since I’ve been studying this issue, I’ve started paying attention when I get requests for money. I have found that breast cancer is not the only issue that can be vague about where the money goes. I would say this is true about a lot of fundraising activities out there. So my advice is to pay attention when you donate money and make sure it goes where you want it to go. And if you are sponsoring or promoting an event that is collecting donations for charity, any charity, be VERY CLEAR about where the donated money will go and what it will be used for. If you’re asked to donate to a national organization, check their rating on Charity Watch or Charity Navigator. You’ll find that some of these national organizations don’t do a very good job with our money. Often they have too many administrative and fundraising costs in relation to what they actually spend on their programs. Others are excellent stewards of our money. Support the organizations that do a good job with this.

Also, if a particular issue is near to your heart, look for local charities that support your issue. A lot of times the local organizations are the ones on the front lines doing the actual work and usually do so with limited overhead costs and lots of volunteer support. Seek them out and donate to them. For example, back to the breast cancer issue, if you are interested in supporting screening for breast cancer for women who cannot afford screening, seek out a local charity that provides this service rather than donating to Komen. In our own York County, the York County Free Clinic offers mammograms to residents in our home county (not in Charlotte) who meet their financial eligibility requirements.

There are so many pink products out there or products with pink ribbons on them that claim to be giving proceeds to breast cancer charities. Before you buy pink, check these out carefully and make sure you know where your money is going. I’ve been surprised at how hard it is sometimes to find out what portion of proceeds for products like this actually go toward a charity and what the charity is.

One last thought: I find that the silliness that goes along with some of this breast cancer “awareness” really bothers me. This photo below is an example:

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I got this from the Komen Facebook page. Really? Maybe I’m being humorless. It’s just that after all I’ve been through, I find it hard to laugh at dogs with bras and pink balloons for boobs. My boobs are long gone.

It’s really not about saving the boobs or the tatas or second base or any of that. It’s about saving lives. And that’s the bottom line.

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