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.

 

Radiation Tips, Tricks, & Tools!

SO I’M DONE! And as such, I thought it might be helpful (maybe?) to post a few things I learned along the radiation brick road.

First of all, expect the worst. I don’t mean this in a pessimistic way – hear me out. Everybody told me, “Oh, it’s so easy! It’s a walk in the park compared to chemo!” Dude, that was NOT the case for me. With chemo, it was a week and a half bad, a week and a half good. The alternation made it easier for me to take – there was always a quickly approaching light at the end of the tunnel. With radiation, it was a six-week, cumulative slog, and it SUCKED. Now, radiation for YOU may very well be like it was for the people who told me it would be easy-peasy. But I’m just trying to prepare you better than they did me – it might not be. Still, it WILL end and you WILL survive it!

Now, onto my favorite part: shopping! Here are some items that helped me and I think might also help you! I think I might also make a video of these for those who pick things up better that way.

1. Boiron First Aid Calendula Cream – Okay so this was my biggest, biggest error. The nurse told me to use calendula cream, so I went on Amazon and searched for calendula cream and went by the nicest, most expensive ones with the highest star ratings. I also watched a widely circulated video where the narrator repeatedly advises women undergoing radiation treatments NOT to use any alcohol or alcohol-based products on their treated skin, and the first ingredient in this cream is alcohol. IGNORE HER! IGNORE RATINGS! This is the cream your nurse was recommending – it is just called Calendula Cream and it’s good! It’s non-greasy and it works. I could have saved myself a lot of pain and suffering if I had just bought this stuff to start with. You will use this and/or Miaderm 3 or more times a day. I did this morning after shower, afternoon after treatment, and evening before bed.
2. Miaderm Radiation Relief – After I started experiencing skin breakdown, I got desperate and began googling for the best possible radiation skin treatments, and this cream came up again and again, so I bought some. After I started using this in conjunction with the cream mentioned above and the compresses I will discuss later, I took my skin from open, raw, and bordering on moist desquamation to completely healed and just pink in a matter of a week IN THE MIDDLE OF TREATMENT. When I mentioned to my technician that I was using it she said at her previous job, which was at a very well-respected breast cancer radiation center, Miaderm is the ONLY thing they recommended to their clients. It’s expensive and there is a reason, trust me.
3. Carrasyn Gel Wound Dressing – I will explain how to use this below, but be sure to ask first if your doc has some they can give you – I got mine for free.
4. Aquaphor Healing Ointment – Exact same info as #3.
5. Telfa Non-Adherent Bandages – This will go with #s 3 & 4, and it will kind of be up to you what size you’ll want (I’ll explain below).
6. CarraDres Clear Hydrogel Sheets – This is an expensive product, and one you will probably only get value out of if your skin breaks down and you’re in bad pain (as I was), so I’d wait on purchasing this. You might also be able to get a few free ones out of your doc. However, it was invaluable to be when my skin did break down. You could also try a less expensive but comparable product, like the ones made by Medela.
7. Avocado Oil – Great if your skin gets very dry (again, as mine did). Obviously it’s an oil, so be prepared for it to get on your clothes. (And remember, if it does, some Dawn dish liquid on oil stains prewash will take them right out.)
8. Prescription saline wash – Obviously you can’t get this on Amazon, so ask your provider – they were able to give it to me free. You keep it in the fridge (it’s non-perishable, but that helps keep it cool and soothing) and put it on a washcloth, which you then use as a compress on raw or broken skin. Made a big difference for me – I did it at night before bed.

All right, so again – my biggest error was getting the wrong damned cream for my radiation rash. I highly recommend the two listed above – if you use them early and often, you may never even need this other stuff. BUT IF YOU DO…

The nurse told me fairly early on about using #s 3, 4, & 5 together, but I tried it during the day. The idea is you take a Telfa bandage (she gave me a few long ones, but I used both long and short and kinda preferred the shorter ones) and put a line each of the aloe wound dressing and Aquaphor healing ointment down the center. You then slap it over the problem area and smush it down and there it stays. Except it doesn’t. It slides around all over the place, so using it during the day was both messy (Aquaphor, as the word “ointment” suggests, is greasy) and inefficient. I then discovered using it as a night dressing and it changed my world. My skin healed so quickly and so well my techs and I literally could not believe it. Typically when your skin opens in the midst of radiation they really don’t expect it to get better until well after you’ve finished, but between these compresses and the Miaderm, I finished radiation with fully closed skin.

The CarraDres pads are a similar idea but less messy, so better for daytime use. However, they also do not adhere well and will not adhere at all to lotioned skin, so be prepared to tuck one into your bra and adjust it constantly.

Avocado oil was what my doc pushed for dry skin caused by radiation. I did apply it fairly often, especially when my skin was at its worst, but did not prefer it because it stains. It can be gotten fairly easily and cheaply, however, so that is a bonus!

I also lived on Advil during the time my skin was open, and even took a few leftover prescription painkillers when it got tough to sleep because of the pain.

That about does it! If you have any questions, or if you want to endorse a product that worked especially well for you, feel free to comment below!

Complaints or gratitude?

I have really been pretty depressed ever since the day I found out radiation on my armpit would continue. I “only” have 8 more sessions, but when you are in pain 24 hours a day, that seems a lot longer than you would think.

I have kind of tried to keep it to myself (how depressed I am) because I feel like facing this entire challenge with gratitude and an upbeat attitude has been one of my strengths and worked to my benefit. But the fact is I AM depressed, and just hiding it isn’t resolving the issue.

There are a number of reasons I am depressed, and my first instinct was to blog about them all, because writing is very soothing for me. But no one wants to listen to someone complain incessantly, so I decided to try to turn each complaint I have around into an expression of gratitude. I know it’s not going to fix my depression, but maybe it will improve my mood, even just for today.

So here goes.

I am grateful that I have a capable doctor with whom I can meet this week to discuss my burns and the pain they’re causing, and I’m grateful my insurance will cover it.

I’m grateful that I can afford a pilates instructor to help strengthen my muscles. I’m grateful I have an amazing friend who is also a massage therapist who helps me manage the pain in my joints. I am grateful my insurance covers an acupuncturist (who’s from Philly!)

I am grateful I have not lost ALL of my eyelashes. I am grateful my eyebrows and hair are growing back in.

I am SO grateful I have a partner who supports me, takes care of me, and has taken on extra duties to ensure I get the rest I need to heal.

I am grateful – I am having a hard time with this one. I am embarrassed, depressed, and angry that chemo sent me into early menopause, and that I don’t know when or if I will come out of it. It is embarrassing to be 38 and in menopause and I don’t – I can’t think of any positive side to it. I am grateful – I am grateful to be alive. I am grateful my body responded to chemo the way it was supposed to, and that I am still here.

I am grateful that I have been able to maintain a social life while undergoing treatment.

I am grateful that I have stayed positive up until now.

I am grateful for the amazing network of people I know in real life and online who have listened to, understood, and supported me throughout this ordeal.

And I am grateful I can write. So grateful for that.

Radiation Burns & Bad Days

So, on Wednesday I met with my radiation oncologist. She told me that this coming Wednesday, they will be reducing the radiation field so that it is focused just on the cavity where the lesion was removed. I asked, “So my armpit will get a break and begin to have a chance to heal?” She told me yes, and I nearly jumped up and did a dance. You see, this is what my armpit looks like.

The very red area in the middle right is where my lymphadenectomy scar is. In the previous photo I posted, it was quite red. After that, it began to blister, and eventually opened. The dark skin all around is dead skin that has been fried by radiation. You can see where it, too, is beginning to peel. The skin underneath is new skin and very raw. Discontinuing radiation in this area was extremely important to me as the area hurts 24 hours a day, makes it very difficult to do normal, everyday tasks, and is also interfering with my sleep. More radiation there means frying that new skin, developing more blisters, and having the possibly of moist desquamation – that is, a blister that opens and instead of revealing dry new skin underneath, reveals moist, undeveloped skin, which can be a gateway for bacteria and infection.

So on Wednesday, when I got the news that I only had three more radiations to that area, I came home on a cloud. Sadly, yesterday the techs did the X-rays to determine what area the last seven treatments would cover, and the open, painful area falls just inside the border. So instead of only two more weeks of pain and skin deterioration in that area, I am facing another month of it.

As a result, I cried. I cried on the table and then I cried again in the changing room. I cried last night and then I cried again today. I think I am done crying now and can just face this and soldier on, but boy am I tired of pain and sleepless nights. Essentially the area hurts so much that when I roll over in my sleep, the pain wakes me. So I will talk to my doctor about that when I see her next week.

I really try to stay positive and upbeat and not let the little things get the best of me, but this has been the longest eight months of my life. Later I will post a photo of my naked chest so that the difference between the radiated side and the non-radiated side is visible, because it’s actually both interesting and shocking. Frankly if someone goes through all this and then the cancer comes back, that is just the ultimate insult. That should be against the laws of nature. Me getting cancer, eh, you could say it’s not fair, but I’d say that’s debatable. Someone doing all this and then having the cancer come back? THAT’S unfair.

Anyhow, in conclusion, to quote Bart Simpson, I didn’t think it was physically possible, but this both sucks and blows.

AGHHH

60-second frustration vent.

My house is a mess because I was incapacitated half the time during chemo and the other half the time was trying to be a good Mom. (And to be honest, it wasn’t exactly especially tidy even before that, but at least I could get all the basics done.) Finally done chemo and have the time and energy to clean, but moving my right arm results in discomfort/pain/friction.* If I go without a bra, my shirt rubs on my right nipple and causes discomfort/pain. If I wear a bra – even a nice, comfortable sleep bra – it chafes at the radiation burns under my armpits and causes friction/pain. Meanwhile my port incision continues to weep.

AGGGHHHHH I AM SO DONE WITH CANCER AND TREATMENT. I WANT MY BODY AND MY LIFE BACK NOW.

*I am supposed to avoid friction at all costs because that is what causes skin breakdown and blisters, and once the blisters open I am subject to infection. And I am not sure the skin would close again until after radiation which is not for ANOTHER THREE WEEKS.

A pause for thought

Yesterday, Dr. Morris told me that my skin looks great for this point in my treatment. That really put a smile on my face and made me feel better. Plus, I’m over halfway done now!

One absurd thing is the port incision on my chest keeps opening a tiny bit and weeping and I finally realized it’s happening when I am not wearing a bra because the weight of my left breast is pulling the incision open. Problem? Radiation oncology told me to avoid wearing a bra as often as possible to minimize friction and maximize airflow. So basically I need a half a bra. I can’t just cut a cup out either because I need to not have anything in my armpit either. Crazy.

Also, came across this video in my newsfeed this morning. Take a minute to watch it all the way through – it’s brief but carries an important message, and one I will try to apply to my life.

Tony Robbins – What Makes Charismatic People Attractive?

Happy Wednesday!

Radiation 18/35

Not such a good day.

The radiation is really starting to take its toll on my skin. My right nipple is significantly darker than my left, and my entire breast feels heavy. I am developing a red, spotty rash from above my nipple to into my armpit. Meanwhile, I have vitiligo in my armpit, so the radiation has made it very red and tender, like a sunburn. Unlike a sunburn, the redness and soreness do not go away. In fact, I learned from my tech today that my skin woes are really only just starting – they will get worse, and continue to worsen even after I am through with radiation (June 9). So essentially I am looking at my skin darkening, burning, and possibly (likely) blistering and opening before this is all over, which really won’t be until the end of June.

I am tired. Not fatigue-tired, thankfully – that hasn’t hit me yet, though I am sure it will. I am mentally tired. I am tired of fighting this enemy that I can’t see or feel. I am tired of waging war on my own body to combat something that may or may not even be there. It has been 7 long months since my first surgery, and I have mostly stayed positive, but today, as I lay on the table, holding those fucking pegs, I thought to myself, “What if I just died? If something killed me, then I wouldn’t have to do this anymore.” I don’t mean suicidal, though I have been there – I mean just, I don’t want to do this anymore. I don’t want to face one more day of self-harm for a result I may or may not see. And my friend, her mother went through all this shit – surgery, chemo, radiation – and guess what? She just had a tumor removed from her spine. Metastasis. So is this worth it? I really don’t know.

I want to quit. Just say, fuck this, I have done enough, been through enough. There is only so much the human mind, spirit, and body can handle, and I am at my limit. When you start to think death is a preferable alternative, I think it’s safe to say you’ve used up your reserves and are pretty much at the end of your rope.

But then I talk to my breast surgeon, who tells me he doesn’t ever think I am going to deal with this cancer again. And I talk to my Mom, who offers words of sympathy and encouragement. And I talk to my husband, who makes me dinner and takes the kids up for their bath so I can write it out. And I talk to the ladies in my Facebook cancer group – some of whom have been through this and come out the other side, some of whom are facing it head on right now, just like me – and they offer words of camaraderie and praise. And I realize: this will be all right. I will be all right.

So yeah. Things suck today. But I’ll go back tomorrow, and every damned day until I’m done, and I’ll suffer and have bad days but in the end it will be behind me and if the cancer does come back, at least I know I can say I did everything I could.

Radiation 12/35

I was cruising along so well that I got comfortable and thought maybe I could do this without any majorly ill effects. I was wrong. And I’m not even halfway done – the treatment cycle or the week.

My right breast is swollen and tender. My right nipple has gotten darker and is sore like a bruise – like a terrible sunburn, the kind that turns your skin nearly purple. Maybe I could deal better if I didn’t have – and LOVE – my children climbing all over me all the time, kneeing me in the chest as often as resting their heads on it. The scar in my armpit from my lymph node removal gets pinker and pinker, and the skin looks thin – not what I would expect from scar tissue. I am slightly afraid it will split, as I have read radiation skin can and often does.

I will ask my doctor about it when I see her Friday.

Funny, the side effects from this treatment really are minimal compared to chemo, but somehow it seems worse in some ways. I think the side effects of chemo were immediate and tangible, but the side effects of radiation are cumulative, so there is more anxiety involved.

And speaking of chemo – six weeks out from the last one today, and the joint pain unfortunately continues. Advil helps, but I try to use it sparingly as I don’t need a destroyed liver on top of the joint pain! Have had acupuncture twice and have noticed no effect (other than the hour lost sitting bored with needles in me). I’ll keep trying.

So, blah. Not a great day for me today, BUT – we did get Gregory’s ear tubes yet and he has had an immediate and overwhelming improvement in his hearing that has made us all giddy. So I’m trying to focus on all the beauty and good outside of my own body for the time being.

Radiation, Week 1 (or Week 1/2, if you prefer)

So I wrote I think on Wednesday, when I started, and hadn’t actually gotten any radiation yet. Now I’ve had two days of radiation, so I am practically an expert.

On Thursday, I was browsing one of the cancer groups on Facebook and happened upon a post regarding breastfeeding after radiation. This was something I had previously been concerned about and asked the nurse about during our very first appointment a long time ago. My radiation oncologist – who frankly I am not super fond of, because she always seems to be in a rush and not have enough time to talk to me or answer my questions (like, on Friday she was literally standing with her hand on the doorknob while I was asking questions) – had already left the room and could not be bothered to come back so the nurse kept having to run out to ask her my questions. With regard to breastfeeding, she came back with the answer that “my supply would be lowered.” Ruby has been a super producer, so I was not overly concerned with this answer. After reading the post on Facebook, I started doing some online research and discovered that every study that has been done indicates that women are UNABLE to breastfeed after lumpectomy and radiation because the breast tissue is too changed and damaged. The women in the studies who could produce anything – through either nursing or pumping – largely gave up and nursed only with the untreated breast because the amount produced was so little that it was not worth the time.

This was understandably a big shock to me. I am not crazy about being pregnant but nursing – which I was only able to accomplish with Conor – ranks among my favorite things in the world. I texted Julian about how heartbroken I was. And of course, the day I found this out was the day I started actual radiation treatments, so I didn’t want to do it at all, and when I laid down on the bed I began crying. The techs were super super nice and dabbed my eyes for me (my arms were already above my head and I was all lined up) and told me I didn’t have to start that day if I didn’t want to. The fact is, I didn’t want to start ANY day after learning what I had. I explained why I was so upset and one of them said it was totally understandable, that I was grieving a loss, and I realized that’s exactly what it was. Cancer took the possibility of breastfeeding from my right breast from me. And unless I choose to forego radiation (which would be stupid), that ship has sailed. And it sucks.

ANYhow, I got the radiation, both Thursday and Friday. Thursday I had all sorts of phantom pains – pain in the gallbladder incision, heartburn – and was worried they were radiation related. I had none of them on Friday after radiation, however, so I think they were in my head. My breast did feel a little tender yesterday, but no skin changes yet. ALSO! Dr. InARush told me that only 10% of women experience tissue changes. This doesn’t seem accurate since EVERY woman I spoke with in the Seattle BC group mentioned changes, but perhaps it’s only 10% of women receiving the type of radiation I am. So that gave me hope that I won’t be disfigured by this. She also said it’s all about your body’s ability to heal itself, and my body has always healed quickly and well. So, fingers crossed!

That’s all the boob news I have for now. Onwards!

Out of the frying pan, into the fire.

I went in today for what I thought was going to be my first radiation treatment, but it turns out the first treatment is actually just a dry run to get ready for the first actual treatment, which will be tomorrow. So basically I got myself all anxious for nothing.

They got me all set up on the table, located my tattoos, drew around them in magic marker so they could easily find them again tomorrow, and then took some X-rays. In between, they came in and drew on me with more magic marker so I could see what the treatment area would be and thus know where to apply the calendula lotion.

All this time I had been lead to believe that they were just going to shoot a radiation beam into the right side of my breast and it would be a super quick zap and I’d be on my way. So it was quite the shock when she drew on me in several different places all around my breast.

I went to get changed after and saw that there were green marker marks essentially from the top of my breast bone between my breasts extending down around the bottom of my breast all the way back up the outside of my breast and well into my armpit – nearly to my back.

I went out to the waiting room and met Julian in silence. I told him super quietly that it had just been a dry run and that the real therapy would be tomorrow. As we walked out he told me that he’d looked at his schedule and could come with me again tomorrow and – are you all right? You look upset. At which point I began fighting back tears, and told him I’d explain once we were in the car.

Once in the car I started weeping quietly and explained that the treatment area was much larger than I expected. They have fucked with my entire body for the last three and a half months and one of the only places I HAVEN’T had major issues is my skin, so of course they have to follow up with this. And this is MY body, but it sure as hell doesn’t feel like it belongs to me right now, and I might not love it all the time, but it’s the only one I’ve got and I’m sick of people screwing with it.

Then I sucked it up and decided that if I can make it through chemo and baldness, I can make it through this. But it still sucks and I hate cancer so much.

Finally, I have been having a lot of muscle pain in my legs and arms and also pretty severe joint pain in my hips. I am not sure if it’s the chemo or the Lupron, so I emailed Dr. Kaplan, who said we could chat about it. I asked him to call me when he had a few minutes to chat and he has not so I am a bit disgruntled about that, so I guess I’ll try to call him tomorrow.

That’s basically all the news I have for now ALTHOUGH I do need to post about eyebrow pencils, and I think I will do that on my other blog and cross-post to here.

OH and my friend Jen buzzed my head last night for what I hope will be the final time. Come on, little hairs! Make yourselves known!