Doctor Blows the Whistle on Chemotherapy

I am here today to express frustration. I have discussed a similar frustration in a previous blog, but I want to touch on it again after seeing the video referenced in the title of this blog.

Some people prefer traditional medicine, and some people prefer naturopathy. I personally prefer integrative medicine, which is a marriage of the two. I saw a naturopath during my cancer treatment and took various natural supplements to help combat effects. I just finished a cleanse to help relieve pain in my joints. At the same time, as a depression sufferer, I know for a fact that chemicals can help me live a healthier, happier life.

I took all my medical decisions very seriously. I researched each one, spoke with multiple medical professionals, and took time to think about what I was doing and why. So it makes me incredibly, incredibly angry when propaganda like this makes it way into my Facebook newsfeed. If you don’t feel like watching it, I will summarize: A “doctor” by the name of Peter Glidden spends five minutes discussing the fact that chemotherapy does not work and is simply a money-generating scam for big pharma and oncologists.

As soon as I saw the title of the video, I was curious. By the time I was halfway through, I was enraged. I couldn’t even finish it, nor did I want to. I took to the web to find out more answers, and sure enough, found a thorough debunking of this doctor’s claims on Snopes. Turns out the good doctor has based all of his research and claims on research published by another doctor in the 1950s who conducted HIS research in the 1930s. If that doesn’t seem THAT long ago to you, I point you to this summary published by the NIH, where – on the first page – you can see that 5-year breast cancer survival has risen from 60% in the early 50s to over 90% in the late 90s. Chemotherapy testing began in the 40s, so draw your own conclusions about what has led to the astounding increase in survival.

All of that background is really beside the point, however. The point is this: When things like that are shared with me, it is equivalent to saying two things. One, I am a stupid and uninformed individual who simply allowed her healthcare decisions to be guided by whatever the doctors suggested, and two, that I just wasted 4 months of my life on something that will probably kill me, or at the very least, will not help me. In fact, based on Dr. Glidden’s assertions, I only have a 3% chance of survival now that I have had chemotherapy. Of course, MY doctor says I have an over 90% chance of survival, but surely he doesn’t have my best interests at heart. He became a doctor simply to make money – not because he cares about women’s health. Thank goodness I have people like Glidden looking out for me – and telling me that now that I’ve had chemo, I am basically almost certainly going to die.

If you think, for a second, that I did not come face to face with my own mortality the instant I heard the word “cancer” over the phone, you are badly mistaken. Likewise, if you think that I do not already know and think about the fact that cancer could come back anytime, anywhere, and kill me, you simply do not understand the psychological impact of cancer. After going through chemotherapy and radiation, being told by some quack, and by whoever chooses to spread his quackery, that I am going to die based on my own INFORMED, RESEARCHED, MEDICALLY SOUND health care decisions is at best insensitive and at worst cruel.

If you truly believe the out of date, fear-mongering information Dr. Glidden is spreading, that is your decision. But understand that cancer and chemotherapy are hard enough without being told you’re making or have made a mistake. And do some research of your own before spreading his misinformation to other people, people who might already be scared as hell as it is.

 

Depression makes its sneaky return?

So for the past four nights I’ve found it very difficult to sleep. I have always suffered from insomnia, but usually Trazodone helps take the edge off, and the fatigue from all the treatment has really kept me sleeping. The last few nights I have averaged 5 – 6 hours, and that’s not solid – that’s on and off. That may sound fine to some but as someone who really needs 8, I’ve been struggling.

Additionally, my appetite has suddenly tapered off to nothing, which is VERY unusual. I didn’t even eat a cupcake at Conor’s birthday! Finally, I have been feeling very lackluster – no motivation, no desire, lots of guilt. Couldn’t get a sitter to go a friend’s event last night and felt terribly about it; have a sitter tonight for plans I’ve really been looking forward to, and now have no desire. So now I’m wondering: is my depression returning?

Of course, it could be all the chemicals still in my system, or my hormones readjusting. (More on that later, actually; hard conversation with Dr. K on Wednesday [re hormone treatment] that could be contributing to the blahs). It could also be that I have been battling a cold and am now having GI issues. Or, finally, the insomnia could of course be causing me to feel depressed – it wouldn’t be the first time.

Regardless, I am nervous, and in that curious depression quandary of feeling desperately lonely but not wanting to talk, of wanting company but not wanting to interact. And I’m just trying all the while to act normal in front of the boys because I don’t want them to be children who grow up remembering “When Mom had one of her spells!” I’ll just try to stay aware and if things degrade I’ll talk to a psychiatrist about my meds.

As far as hormone treatment, we met with Dr. K Wednesday and of course he strongly recommended I do the once monthly Lupron shots. I told him no, and he was – I guess probably just concerned, but of course I felt it was disapproving. He asked if I could tell him why, just so he knew, and I started crying as I described the hot flashes, night sweats, wrinkles, roughening of the skin around my jaw, weight gain – all of which happened while I was on Lupron during chemo. I told him I had no problem with growing old, no problem with turning 45, but that I’d like to do it in seven years, when I turn 45. He understood and was supportive, and we agreed to talk about it again down the line. Complicating things for me is the fact that a friend’s mother had breast cancer roughly ten years ago, and she did the full course – chemo, radiation, and hormone therapy – and it has now metastasized. So it’s all a roll of the dice anyhow.

After we left I realized it’s not just the symptoms I don’t want – it’s the daily reminder of those symptoms. That I had cancer, that I can have it again, that it could kill me. I mean it’s always going to be at the back of brain anyhow, but I don’t need to be reminded three times a day when I take the Gabapentin to combat the hot flashes (which by the way I am now off of, yay), as well as every fucking time those hot flashes occur.

The other day I went in to get sugared and it was an aesthetician I hadn’t met before, as mine is out sick. She asked me about my cancer and treatment and when she found out I was through, she remarked, “So you beat cancer.” Which, I am sure she was trying to be nice, but no. No I haven’t and honestly I can’t help but think that I won’t really have “beat cancer” until I die of something else. On the plus side, I told Julian this and it’s led to all sorts of great jokes, like me on my death bed and my last words being, “Suck it, cancer! Heart disease wins again!” (Julian’s: “Yes! Hit by a car! Take that, cancer!”)

Starting Monday, Julian and I are going to try to do a 10-day green smoothie cleanse. I am doing it to get rid of all the poison left in my system and to try to be healthier – I’m hoping it might also help with my joints (which are terrible, and contributing to my depression). He is doing it because he is supportive and amazing. Dr. K gave it the thumbs up so I’m hoping for the best.

This turned out to be a long, rambling post, but I guess I had a lot inside me. Happy Saturday – get out there and live.

Waiting and changing

So the reason I haven’t posted anything cancer-related lately is there has been nothing to post. We met with that medical oncologist who made me really unhappy and he sent away for the Oncotype DX test, and there was an insurance snafu, so the results are not back.

In the meantime I made appointments with two other medical oncologists, both recommended by other women who have been through the breast cancer wringer. We met with one today and I cannot even begin to explain the difference. I left the last appointment feeling defeated, worried, unhappy, helpless, and judged. I left this appointment feeling supported, understood, heard, hopeful, healthy, and capable. Where the other doctor basically presented us with statistics and a one-size-fits-all treatment plan, this doctor (also a male) was flexible, agreed that the treatment should be my choice and fit with my life, and cited numerous examples not just of women delaying taking Tamoxifen but also of using a totally different drug, Lupron. He also noted my history of depression and stated that these drugs are contraindicated for depression – something the other doctor didn’t notice/mention – and said that would be a concern and something we’d have to keep a close eye on.

This doctor has mannerisms and phrasing that were so familiar and reminded me so much of my Dad that I finally asked him where he was from. He told me New York City, and when I told him I was from Philadelphia, he said, “Oh you’re not a Phillies and Eagles fan are you?” and snarled disparagingly. LOVE.

Several times during our meeting he touched my hands or my shoulder gently and reassuringly. Everything about him was the polar opposite of what I experienced with the other doctor and I actually cried during this appointment as well – from relief.

I have been walking around for the past two weeks with a gray cloud over my head, feeling fearful and depressed about the future, uncertain how my life was going to play out at the hands of medical professionals. After meeting with this doctor I feel in charge of my treatment, the hows, whats, and whys, and like I have a partner in my care plan, instead of someone who will dictate what I should do and show disapproval if I do not agree.

Could not be more grateful. Really looking forward to moving through this now instead of dreading it.

Chocolate and tears

What do you do when, after loads of great news, you get a whole face full of shit?

You sit down and eat an entire chocolate bar, that’s what.

I went to see the radiation and medical oncologists today. I have been dreading it because I knew I didn’t want radiation or endocrine therapy (Tamoxifen) and I knew they would tell me that’s what I had to do. I was not disappointed in my expectations.

I can’t even get into all the stats and details because frankly my head is swimming and so were my eyes. Radiation takes your chances of relapse from 30% down to 3%, or something like that. So I grudgingly agreed. I go in on 12/14 to get prepped and tattooed (37 years without a fucking tattoo and now I have to get one and it’s not even a black cat). I’ll be starting off my new year with radiation, so so far, 2016 is not looking much better for me than 2015.

Then off to the medical oncologist for more devastating news: chemo is not actually out of the question, and no matter what, they strongly recommend I do the endocrine therapy. As previously mentioned, this is five years of medication that stops your breasts from receiving estrogen and basically gives you five glorious years of menopause like symptoms. Given that I am 37, that means essentially I’d have five years of menopause before going into actual menopause. Additionally, Julian and I have been seriously discussing trying for a third and final baby, starting the process this summer, and you should not (and by should not I mean cannot for health and safety reasons) get pregnant and/or nurse on Tamoxifen. He started talking to us about seeing a fertility expert, harvesting eggs, etc, and I just got SO fucking angry. First of all because I hate the fact that it’s a foregone conclusion that they recommend Tamoxifen so therefore I will take Tamoxifen and it doesn’t matter what else I have planned in my life or what I want to do. Second, I hated being told that by a man because what the hell does he know? Has he been through menopause? Has he had breast cancer? Has HE taken five years of Tamoxifen?

Finally after years of feeling like I can do most anything adequately but nothing excellently, I found out what I am really good at: being a mom. I love it, I enjoy it, I am confident in it, and I make awesome little people. And now that I am hitting my stride and ready for the final installment in our fantastic family, BAM. God says eff you, no more kids. Instead you get five years of hot flashes and possible uterine cancer, and guess what? You might still get breast cancer that goes systemic and kills you. HAHA GOOD ONE RIGHT?!?

I am sad and angry. I know I need to see some other doctors and get second opinions but right now I just want to say screw it and pretend like I never had cancer and do nothing. And if it happens again and kills me well at least I will have gotten to live what remains of my life in the way I want to, doing the things I want to do, instead of burning the hell out of my boobs and ingesting copious amounts of chemicals.

I just keep repeating again and again, “I am not taking that drug. I’m not. I won’t do it.” But I’m afraid too, that if the breast cancer returns I will blame myself like crazy.

We’ll be out of town next week so I guess I will use that sort of down time to research doctors and make appointments for second opinions before rushing ahead with anything. But this all sucks and really has me down.

And oh yeah, someone broke two windows on my car on Saturday so they could steal the kids’ diaper bag, which Araceli left in the car. Fuck you, 2015. No seriously. Fuck you.

One week post-op!

For those who haven’t been following along at home, the Making Strides fundraiser was a success, the lumpectomy was a success, and my charity Halloween party was a success. Pretty good news in a time that has been a little stressful, to say the least!

My pain is not too bad, although it flared up yesterday and today. I realized that I have been overdoing it, which I swore to myself I wouldn’t. I think I do indeed have a problem asking for help. The first two or three days after surgery I was okay with being taken care of, taking it easy, etc. But by days 3-4 I started doing more than I should simply to avoid asking Julian (or anyone else) to help me. I asked myself why this is, and I realized it’s because I am afraid people will think I am lazy, malingering, or taking advantage of their good nature. Even today I swore I wouldn’t pick the kids up or physically exert myself and I found myself doing both rather than asking for assistance. Besides not liking asking for help, I also just really don’t like sitting still! There’s always so much to do and never enough time to do it.

The scar in my armpit looks amazing. One of the steri strips has come off the breast scar and it looks literally like a scratch. I mean it’s almost invisible. I don’t dare to hope the whole thing will look that way, but WOW. After all my worrying.

Next week I have a s**tload of appointments – followup with breast surgeon, radiation oncologist, medical oncologist, cancer naturopathist. I am nervous but interested to hear what they all have to say! Julian is supportive in me not wanting to do either radiation or Tamoxifen, but we’re both keeping open minds with regards to professional opinions and recommendations, as well as statistics.

That’s about it!