Sandy is a 54 year-old grammar school teacher. She met her second husband during her breast cancer journey. Her diagnosis is different from all of our other patients in that her breast cancer was discovered after breast reduction surgery. From there, she went onto have a lumpectomy where it was discovered that the breast cancer had spread significantly to her lymph nodes. Chemotherapy and radiation followed. Suffering many side effects, Sandy talks about the fatigue, hair loss, and most importantly, chemo brain fog, which continues to be a factor a couple years after her treatment. She talks openly about her resistance to support and recommends all breast cancer patients “just say yes!”
I’m Sandy. I am a teacher; live in Redondo Beach, California, with my husband. I have two children and my husband has three, and we've been married for about a year-and-a-half, and he's a teacher, so we have wonderful vacation time together.
I took very good care of myself and had mammograms every year when I was told to have them and wasn't incredibly good about doing self-exams and had been pondering having a breast reduction. I finally decided, okay, I'm going to do it in August. Went under the knife; had it done; everything went swimmingly.
Received a call from my doctor, the surgeon, the night before my appointment to be unwrapped and have my final check, and he was verifying or checking to make sure I was going to be coming in the next day, which in hindsight or retrospect I should have thought that was an odd phone call to get. When I got to his office the next day he couldn't quite look me in the eye. First he unwrapped me and he said you look great. He said, “but I have some bad news.” He said in sending the tissue to the path lab which he always did they found a tumor.
The fact that he had no idea there was anything there because the mammogram had shown nothing so he thought he had a clean…there was nothing for him to worry about…there was a very good chance he would have cut through that, in which case we wouldn't be having this same conversation.
I sort of left there in a fog and immediately went to my sister's house and just broke into tears. I mean that's …it's kind of the last thing you expect to hear. And my sister Debbie just sort of took over.
We went to the first oncologist. All I remember is his office was absolutely freezing, and he was very clinical. There was no warm and fuzzy; never looked us in the eye. We both looked at each other when we walked out of his office. We were like, did he ever look at you?
My breast surgeon put me out for the sentinel node biopsy and the first thing I asked her when I woke up and she was standing right there with a big warm smile on her face…the first thing I asked her was would I lose my hair and she said I'm afraid so. I guess that was my way of saying do I have to have chemotherapy. Is it worse than you guys thought?
The recovery from the needle biopsy was really tough because you have a drain and you cannot empty your drain yourself so my sister was at my house three times a day.
I used to remember every time we’d think, okay, it's starting… it's ebbing...it's going to end, it would just fill. So she was sort of at my beck and call.
I had to wait until November to have my first chemo. In anticipation of that I cut my hair. They kept saying you might not lose your hair. Some of these cocktails you don't lose your hair. And honestly that is the number one fear. It's not how sick you're going to get because there are drugs that keep you from getting sick.
Well, I was allergic to the chemo so they had to give me Benedryl and then I was allergic to Benedryl so I had incredible restless legs to the point where I was shaking out of the chair but they had to give me the Benedrry to get the chemo in me so I think it was on the second round that they finally just knocked me out with Ativan which still gave me the restless legs. I don't know if you've ever had it before but it is…you feel like you're just going to jump off the cliff. There is a shot available and some doctors use it and some don't, and it depends on your insurance because it is a very expensive shot that is given to you the day after your chemo treatment, and it is to boost your immune system, and they have to give it 24 hours, so if I had chemo at, say, ten o'clock in the morning, I had to wait until whatever time I finished and go at that point the next day.
The side effects of that were worse than the chemo. It affects your joints and for most people it's like their major joints, their thighs, their arms, but for me it was my eye sockets. For whatever reason my eyes and my jaw and it was incredibly painful.
I remember I asked if I could get a prescription for marijuana because everything they gave me… they gave me Oxycontin, and then they started with Vicodin. They gave me Darvocet. The Oxycontin I took once and I thought it was horrible.
So I asked for marijuana and they said they had plenty of things that they could try. They wouldn't give me that so I just went another…I had another avenue…let's forget it. And it worked. It was instant relief for me. As it got into my system, it relaxed me, and I must have been…there must have been a lot of tension in my system and in the joints, and it just relaxed me and took all of that away. But it had the same effect that a very strong painkiller would have had…the marijuana did. My daughter was there when I did it and Molly didn't drink till she was 21. She's like straight as an arrow. And I said, okay, Molly, now you can go to Trader Joe's and get me popcorn because it really made me hungry which was good because I wasn't really eating very much. But it just made me feel so much better.
The other time that I remember was when my hair fell out. And you see movies and in fact we're big fans of Breaking Bad, pretty intense… but when the lead character's hair starts to fall out after he starts his chemo, he's in the shower and these big clumps come out, it’s not how really how it happens? But, when it did start to happen for me, it was incredibly painful. I was in the shower and I noticed it was..there was some hair in my hands. What I noticed was my hair follicles; they must have been expanding or something because I could not put my head on the pillow; I actually slept sitting up. And I never really found out what that was all about. As soon as my hair finished falling out, .I was fine.
I did try a wig. I was coming out of a Mexican restaurant and may have had one too many margaritas, may not have, and I must have..I took it off because I was sweating and I must have dropped it or something, so that was my wig experience. I tried scarves but they tend to slip back on your head because there's nothing to hold them really. Wore some baseball caps and then really once I was comfortable around people I just didn't wear anything.
The radiation was horrible. That was worse for me than the chemo. I was burned completely and I already had lymphedema from having 25 lymph nodes taken out. We don't have that many lymph nodes in our system, so to have 25 taken out is a significant number.
Lymphedema is a swelling of your lymph system. Once you have those lymph nodes taken out, you have nothing to fight off infection. It's a traveling system. They call it a gateway throughout your body. If I get burned like the tiniest little burn; if I have a hangnail that I don't take care of; anything on my right arm, I have to tend to right away. I carry around iodine sticks and alcohol swabs and all sorts of things because I have had cellulitis twice now as a result of this whole thing and it is a nasty, nasty infection, and it's a very high fever and you're in bed for probably ten days.
Chemo brain fog is something that I have made light of quite a bit, and my mother died of an Alzheimer's-related things and dementia, and so part of me is like, oh my gosh, is it that or am I really having this chemo brain fog, which I believe it is. In fact, it just happened to me the other day with some teachers, and we were going over an email and said, don't you remember we all sat around and we talked about this curriculum? I faked it until I could get back into my office and go over the curriculum. And sometimes I get really frustrated because I don't remember.
Long-term memory I don't have a problem, but it's the day to day; it doesn't happen always, but I absolutely know it's there. I'm not as sharp as I used to be.
After I was diagnosed and I went through everything, I'm divorced and I was sort of anxious to try and meet someone and so I sort of put myself out there on Catholic Singles, and Dan who is now my husband…I emailed and I said, oh, I like your smile. Well, he never emailed me back because men don't pay for the whole website; they just kind of go fishing and see, oh, somebody emailed me. So, anyway, long story short, he finally emailed me and we decided to meet.
Right before we were going to meet, we were talking on the phone. I said I guess I should tell you something. I don't really look like my picture; I actually lost my hair; I had breast cancer and so it's just starting to grow back in. The first thing he said to me when I saw him was I like…I love your hair, and he kind of put his hand through the little bit that I had on my head. And that was sort of…for me that sealed the deal.
I was talking to Dan, oh, a month or so ago about it, I said this is something that's really…I realize really important to me is to be able to let my hair grow again, but at the same time it's kind of scary for me because part of me is scared that I might lose it again. And it's something that I can't explain other than to say…I mean I know I'm healthy, but there is always in the back of my head, because I chose not to have a mastectomy, that I could be diagnosed again. But I also am very comfortable in knowing that if I'm ever told that there's even a chance, off they go. It's not even a question. It's just not worth it.
There's never a dumb question. If you don't understand something, ask. These doctors are incredibly bright but a lot of times they are not talking to you down on your level. You need them to because you're the one going through it. And make sure when you're choosing a doctor that you not only like him or her but everyone in that office.
I don't know if there hadn't been a Debbie in the world, I don't know what I would have done. She dropped everything. I was incredibly blessed.
Don't be afraid to take people up on their offer to do things for you because that is what they want to do, and I am so horrible at that. I mean people wanted to bring me dinner and offered to drive me, oh, no, no, I'm fine. Just say yes. If they're offering, it's because they want to. And you need it. You cannot let yourself get run down and you can't worry about stuff. You can't have any worries. You can't have anything. If you have bills to pay, give them to somebody else to pay. I mean it really…no stress, because the stress is going to make you sick.
And your immune system is so compromised from day one, and if you get sick then you can't do chemo and then you're not going to heal. I mean, yeah, there are days when you do feel sorry for yourself, and you know what, you should because it sucks. There's no doubt about it. You're human, but most of the time you've got to just chin up and allow people around you and surround yourself with those people who are going to make you feel that way.