My uneventful Tamoxifen experience

In late July, I took my first dose of Tamoxifen. It was strangely ceremonial because I had for so long considered the drug just short of a nightmare. It was one of those moments where you just do it because you’re told and don’t have any other options…like chemo…like surgery. I was terrified but, frankly, just too worn out on the topic to resist any longer.

Because I’m pre-menopausal, my body is still creating plenty of estrogen. But, my type of cancer thrived on estrogen. Removing estrogen from my body can “starve” any pesky cancer cells that may be still floating around trying to take up shop somewhere in my body and kill me. That’s where Tamoxifen comes into play. The 5-year daily pill is able to protect breast cells (or rogue breast cancer cells) from estrogen uptake without tinkering with other important things that need estrogen like bones.

Why was I scared of a drug known to significantly reduce chances of recurrence of estrogen receptive breast cancer? Some women do not tolerate the drug well and I had heard of a myriad of awful side effects. The official list of side effects were very similar to going through natural menopause, but more severe. Loss of libido, mood, and skin changes were top concerns for me. I was afraid it would turn me into a tired, cranky, dried up piece of toast. I already refer to myself as a broke-down Pinto so the “toast” factor was almost too much to bare.

My doctor told me that I should at least try Tamoxifen. My other options were removal of my ovaries or doing nothing, treatment options that felt either extreme or careless.

The first month on the pill I had night sweats and a mood swing or two. Luckily, my experience was nothing like what I’d heard from other women. It wasn’t a total breeze. Hormones are delicate things after all. But my body adapted. It was much, much easier than I expected.

I’m nearly 6 months in and I feel great. Not so much as a hot flash to mention. I did the right thing…kept an open mind, had sex regularly, maintained fitness, all the things that a healthy girl my age should do anyway. The peace of mind alone should have been enough, but, as always, it wasn’t enough for me. I want to enjoy life, not just live it.

Yesterday I went back up in the aerial silks for the time in 18 months. Being back up in the air, feeling a tiny bit of the strength I used to have, felt so blissfully familiar. As enormously as things have changed since May 2016, it was a relief to know that some things, the important things, could stay the same.

 

02 Rachael

Pot isn’t for everyone I realize. I don’t care for the stuff myself after a rather misfortunate bus trip to Nimbin, Austrailia in college. That was before I got cancer.

The physical and (most surprising to me) emotional effects of chemotherapy are severe. Show-stopping, jaw-dropping, hardest-thing-ever severe. You simply cannot imagine the comprehensive body trauma of this treatment. It is a wonder they call it a cure at all.

Many of the effects of chemo are strangley non-specific. The literature given to me before I began treatment stated such vague expectations as “feeling generally unwell,” a staggering understatement. While my oncology nurse tries her damnedest to treat my side-effect symptoms with additional medicine, she can’t realistically solve general unwellness. Add acute, sporadic depression, the kind that can only be explained by facing one’s own untimely, unfair, unexpected mortality, and you’ve got quite a puzzling medical conundrum on your hands.

There isn’t a single non-addictive drug available that combats all these things at once successfully except cannabis. Texas legalized CBD oil in 2015* but has not yet legalized medical marijuana use. I’m fortunate, however, to have access to both THC and CBD products, even though my means are not always legal. I feel so, so sorry for patients who do not.

Let me be very clear. I’m not gazing into a lava lamp while listening to Bob Marley, giggling and eating Doritos. I’m sick as fuck. There is no charm in my drug use.

A dear friend recently visited a farm in Oregon where they are growing organic, medical-grade hemp for use in CBD products to treat patients with cancer, alzheimer’s, epilepsy, and other debilitating diseases. She was able to name one of the rows after me. There were lots of tears when I got the photo of this beautiful gift, lots of tears.

I want to invite anyone opposed to the legalization of marijuana to pop in on a person with cancer a few days after chemo treatment or spend just 5 five minutes in the chemo room with me. I want you to look into the face of anyone with cancer or MS or schizophrenia or any other of the terrible diseases and disease treatments that benefit from marijuana use and see that pain. Your mind will be forever changed. As more and more lawmakers do these things (and more and more citizens demand they do), I doubt very much pot will be illegal in Texas for much longer. I hope that both the restriction and the stigma of medical marijuana are soon a thing of the past.

* While CBD is legal in Texas, DPS continues to make it difficult to acquire it, including at People’s Pharmacy where I purchased mine.

Dirty Gummy Pillows

When preparing for chemotherapy, I resisted the urge to read forums and get advice from non-professionals. I would be doing chemo no matter what so gathering details about the potentially sick and wrong things it would do to me seemed unnecessarily cruel.

I attempted this same methodology on surgery research and felt quite unprepared for the conversations had with my breast surgeon and as I interviewed plastic surgeons who would be performing reconstruction. I’ve since been devouring info, images, personal experiences, and options. Is it scary? You bet. But, because my decision will impact my life forever, I want to move forward with my eyes wide open.

I am opting for a bilateral nipple-sparing mastectomy and implant reconstruction. In other words, we will remove both breasts but leave the skin and nipple as a pocket for (sorta) immediate reconstruction. It is a more extreme surgery than a lumpectomy with radiation, which I’m also a candidate for, but I have good reasons for my decision.

Why, you ask, would I say “bye, Felicia” to both my breasts when I don’t have to? Great question.

First, a lumpectomy would require 7 weeks of daily radiation therapy post-surgery. That extends my treatment significantly in a pretty un-fun way. Radiation could leave my skin leathery for life and could prevent reconstruction options later on should the cancer return.

Also, leaving breast tissue makes me nervous. Statistically, lumpectomy combined with radiation does provide similarly low chance of cancer recurrence compared with mastectomy. But, I like to use my brain as well as stats. My brain knows that when breast tissue is present, there is a chance the cancer will return and I’ll have to do a whole treatment plan similar to the one I’m doing now all over again. Since I’m so young, the chances do increase it could happen again. I’m not willing to risk that and would instead prefer to have a more radical surgery preventatively, even though the complications from a larger surgery are more likely.

From a cosmetic standpoint, breast symmetry is more likely if I have the same surgery on both breasts. My breasts are small but nearly perfect and I’d like them to stay that way. While I didn’t intend on ever having breast augmentation, I always fantasized about slightly larger, perky breasts, especially as I got a bit older and began to notice gravity’s gentle coaxing. Now I’ll get my chance. You wanted a silver living, here you go.

That being said, I want a very natural look and highest safety rating with my new breasts. This means I will likely be doing a tear-drop shaped*, cohesive silicon implant, also known as a “gummy bear” implant. They don’t leak and have a very natural appearance and feel. They feel like a new, just-opened gummy bear, not one that sat on the counter overnight.

I also believe, because I’m pretty active, that I’ll have the implant placed above the pectoral muscle. This is much less painful during recovery and eliminates the chance the implants will move around when I am dancing in aerial silks or otherwise flinging myself around dance floors and music festivals.

The mastectomy surgery will be performed after I’ve recovered from the last chemo treatment so likely early November 2016. Skin expanders may be placed during that surgery to allow for healing and ensure the final implants look, feel, and behave like champs. Then, they’ll swap out the expanders with soft, snuggly gummy bear implants for us all to enjoy a few months later.

I’ll follow up with more info once final decisions have been made and post pics as I can.

*Updated implant info here.

Fortune Cookie Wisdom: Keep Going

Round 4 of 6 today. My head is frozen solid with my cold caps and my amazing ladies cancer team are knocking it out of the park. The oncology doctors seem very pleased with my progress and feel I make an excellent tumor mercenary. Also, everyone is dumbstruck I haven’t yet lost my hair! #penguincoldcapsrock I daresay today is going smoothly. #dontcountchickens

Tables Have Turned

The tumor in my right breast never hurt. Before I knew what it was I touched it a lot and not always gently. It never gave even a whimper. Then, the biopsy was a spear that wounded it. And it was pissed. It roared and ached and swelled and bruised. It is like it knew it had been discovered. But there was nothing it could do. We found out yesterday it is fighting a loosing battle.

The tumor has reduced by 50% according to the radiologist at the mid-way mammogram and ultrasound. The chemo is working!

Tomorrow I have Round 4 of 6 and I’m going into it with a quite different attitude. Knowing that we are fixing this makes the dark cloud and discomfort of treatment worth it.

Bring it, fucker.

Complain. Repeat.

Halfway should feel a little more triumphant. Instead it just feels like a lot more work yet to do. One thing  I’m trying less of is privacy. I want to try to help others who go through breast cancer treatment with this blog if I can, if for nothing else than an alternative to the endless forum discussions I haven’t found useful. Here it goes.

Heartburn has been threatening me in a merciless way. I’ve never had heartburn before so the sensation is new (as is the prevention and treatment). And this is no ordinary heartburn. The esophagus is literally burned by the chemotherapy drugs. So, simply avoiding flaming hot, delicious Indian curry isn’t going to help.

At first I felt pressure on my sternum that I interpreted as a side effect of Neulasta, the bone marrow stimulant injection I get about 27 hours after chemo to speed up white blood cell replacement. I had heard it could cause bone pain. Turns out, the sternum thing wasn’t bone pain. It was severe, no good, very bad heartburn that made even breathing effortful. They prescribed Protonix, an antacid, which helped during round 1 and 2. I could tell it was getting progressively worse though and by round 3 I was in serious trouble. I couldn’t eat solid food without choking. After many phone calls complaining of my symptoms, my oncology nurse has now prescribed Dexilant which worked overnight like a miracle. My advice is to always keep complaining if you feel uncomfortable. There is no harm in it. You don’t have to feel bad.

Also, don’t be afraid of Neulasta. I almost refused it initially, so terrified was I of bone pain described by others. I have had no bone pain and my blood counts equalize within just a few days of chemo treatment. My body heals. I feel better. It means faster bounce back so you’re in better shape for the following round.

My only complaint about Neulasta is that the injection machine they adhere to my belly keeps fucking up, blinking red or otherwise confusing everyone. The first one did, in fact, malfunction. But, when it works, it has helped me and beats the hell out of living life in a bubble, avoiding friends, pets, and public places for fear of a hospitalizing infection. Try it at least once to see if it works for you.

On that note (and perhaps most importantly), avoid assuming the side effects others experience will happen to you. I had plenty of people try to scare me with tales of their own terrible chemo side effects. It did not help me in any way. In fact, I needlessly delayed bringing up the pressure in my sternum because I had “heard” that sternum pain was expected with Nuelasta. I could have saved myself a few days of heartburn!

Everyone truly is different. I’ve had comparatively few side effects actually and none that I can’t handle so far. I find it better to go forward with less information on side effects and gather it only as needed. Remember, the people on those forums, bitching endlessly about their side effects, are only on there because they are in the worst shape. Those that aren’t in terrible shape are out living life because they feel fine. (Except those that write blog posts on Friday nights…those people are cool.)

In summary, assume you will have no side effects until you have them and then complain about them like mad to your nurses until they fix them. [Drops the mic.]

Down to Business

Here’s what we’re working with.

  • Right breast Invasive Ductal Carcinoma (IDC) 1cm x 1.5cm
  • Stage 1a
  • Grade 2
  • Triple positive (ER+, PR+, HER2+)
  • Sentinel Node Biopsy: Negative
  • Bone Scan: Negative
  • Brain MRI: Negative
  • Chest/Abdomen/Pelvis CT Scan: Negative
  • BRCA Gene Mutation: Negative

It might not seem like it but this is actually good news, aggressive, murderous, unappreciated tumor notwithstanding.

The treatment is:

  • TCHP (Taxotere, Carboplatin, Herceptin, Perjeta) chemotherapy once every 3 weeks for 6 treatments, then Herceptin every 3 weeks for total of 1 year
  • Surgery
  • Radiation (depending on surgery)

I’ve also got a sizeable team of alternative therapists to assist with the side effects. So, we’ve pretty much got it all covered.

Why does this tiny lump in this tiny boob need so much damn attention? Lots of reasons. HER2+ tumors are the icky kind that like to spread all over your body and kill you. So it must be dealt with swiftly and brutally. One reason that is top of my mind is that I’m young. I need to obliterate this thing so that I never have to do this again.

And so we’re off…