Meeting With the Medical Oncologist
Yesterday I finally sat down with the Medical Oncologist that will be in charge of my chemotherapy and endocrine therapy. She, along with one other doctor who I have yet to meet, will be my new points of contact for the next year. Before I go into the details of my treatment, I want to say that in the last few weeks, since “Pinktober” has started, I’ve become vividly aware of how lucky I am. I know a lot of people would think otherwise, given the amount of treatment I still have to go through, but compared to many, many women, I am lucky. I’m not losing my breasts, undergoing major reconstructive surgery, having to get test upon test and pray that the chemotherapy is working, and I’m not one of the women fighting metastatic or triple negative breast cancer, and for that I am beyond thankful.
I’ve become more aware of just how dangerous this disease really is through social media, and although my treatment will lower my risk of recurrence from the current 25-30% chance to 10%, that isn’t low enough for me. I want it as low as I can get it. If that means I change my diet, research lifestyle changes I can make, or take preventative measures going forward, I will. Before I go into the details of my treatment, I urge anyone who reads this to really think about when/if you donate money this month, where is that money going? Yes I want more research on finding a cure for breast cancer, but it’s estimated that 30% of women diagnosed with early stage breast cancer will experience metastasis and progress to stage four breast cancer at some point in their lives. I’m early stage breast cancer. So before you donate, or when you look at me and think I have it rough given my treatment plan, google metastatic breast cancer.
Before Chemotherapy
Things are starting to pick up again in the doctors’ appointment department. Before I can start chemotherapy, I will have to get an EKG to check my heart, and they will be placing a port in my chest, which I will have for the remainder of the time I’m receiving chemotherapy (a year). The port placement is minor surgery, but I won’t need to be put to sleep for it. In the next two weeks I will have a “teach appointment” with a chemotherapy nurse to teach me about my treatments, an EKG at The Elliot, the port placement, a post-op appointment with my Plastic Surgeon, and an appointment with my Radiation Oncologist to talk about that aspect of my treatment (radiation comes last). I also have to meet with my PCP to talk about my medications and make sure everything is going well with my anxiety. So, along with my graduate class, I will be pretty busy getting poked and prodded for the next two weeks and have at least six doctor’s appointments/procedures done.
Chemotherapy
I was given a tentative start date for when my first round of chemotherapy would be at my appointment, and it is scheduled for October 21, 2020 at this time. I will be getting two different chemotherapy drugs: Herceptin and Taxol administered intravenously through the port in my neck. Along with these two drugs, at each treatment session, I will get medication to help me not get sick (I believe it’s benadryl) and I will also have to take a steroid called Dexamethasone because one of the side effects of Taxol is allergic reactions including trouble breathing, itching, rash, chest pain, fever, chills, and dizziness.
The schedule for my chemotherapy is as follows:
12 rounds once a week of Herceptin/Taxol (3 months of treatment)
14 rounds once every three weeks of Herceptin (9 months of treatment)
Ultimately, I will be having chemotherapy for a year total, however, after the initial three months my Herceptin-only treatments are supposed to be much less intense because they are maintenance doses. I will be getting EKGs every three months throughout the year of treatment because Herceptin has a risk of causing heart damage.
What I Expect During Chemotherapy
Like I said at the beginning of this post, I’m one of the very lucky ones. My two chemotherapy drugs come with mild side effects. There is a likelihood I will experience nausea, but it should be mild. I will be given prescriptions for anti-nausea medications to be taken at home, as needed. I will lose my hair because of the Taxol. This usually occurs around the third treatment. Because the chemotherapy is on the more mild side, my white blood cells shouldn’t drop too low weekly, which means I won’t need to get any additional drugs throughout the week to maintain my levels. Prior to each round of chemo, they take blood to check your white blood cell count. I shouldn’t have to worry about being more susceptible to getting sick due to a drop in my white blood cell counts, but I still will be cautious and try to avoid a lot of human interaction throughout the three months of chemo.
I will be tired, and the Oncologist said that usually days 3 and 4 are the worst. I may experience changes in taste/lose my taste, have mouth sores, a mild fever, aches and pains, peripheral neuropathy, and stomach issues. Quite honestly, the lists of side effects for both drugs are so long I don’t want to read them all because it’s just depressing. I am essentially putting poison in my body to kill everything that’s in there for three months and then an additional nine after that I’m putting in a little less poison, but poison nonetheless.
After Chemotherapy
Once I’m done with the initial three months of chemotherapy, I will receive six weeks of targeted radiation therapy, five days a week. That’s thirty rounds of radiation. As of right now I am not at all worried about radiation. After chemotherapy, nothing sounds bad anymore. I meet with the Radiation Oncologist in a week and will find out more about what that will be like and when I will be scheduled to start. For now, all I know is that my surgeon said radiation will make me tired, is like a really bad sunburn, and I will experience my skin “sloughing off” by the end of it and that can be painful. I will be getting radiation while still receiving the maintenance doses of Herceptin.
Endocrine Therapy
At some point after I’m done with the three months of terrible chemotherapy I need to wean myself off of one of my anxiety medications: Paxil. I’ve taken Paxil 20mg for fourteen years now, and I take it to manage my Panic Disorder. I switched off of it when I was about twenty-two and it was the worst two weeks of my adult life. The withdrawals, quite frankly, suck. I had been on it for only three years at the time, so I can only imagine the withdrawals after fourteen are going to be not fun.
The only way I can explain the withdrawals is it’s like all of the nerves in your body are hypersensitive. I would move my arm, head, any body part, and it would send these shock-like feelings through my nerves in that body part (like when you bang your elbow, that tingling feeling, that is what the shocks feel like). On top of that, it made me really “off” mentally. The way I combated the side effects was taking a much stronger anxiety medication to essentially put myself into a drug-induced stupor for a week. The withdrawal symptoms seemed to only last about two weeks if I remember correctly.
The reason I have to get off of Paxil (and part of the reason I am now on two anti-anxiety meds), is because out of all of the medications for anxiety that exist, I happen to be on the one drug you can’t take while getting Endocrine Therapy (lucky me). I have to be honest, when they first told me I had to get off Paxil, I wanted to say no I’ll just forgo Endocrine Therapy. But after everything I’ve gone through, and will go through soon, getting off Paxil seems like nothing. I know the withdrawals will suck, but I’m hoping if I go really slowly decreasing my dosage I can avoid having to take a stronger anti-anxiety drug at all to combat the withdrawals.
Because my cancer is hormone receptor positive (estrogen/progesterone which my body naturally produces is essentially feeding the cancer cells), I will have to take a drug called Tamoxifen for ten years. This drug is a hormone blocker which doesn’t allow any future or current cancer cells to “eat” the hormones my body is still making. My Medical Oncologist did say that in the future they will recommend I get a shot that will shut down my ovaries (read: instant menopause), but I don’t have to worry about that for at least a few years. Side effects of Tamoxifen are mood swings and hot flashes (among other things).
Summary
What I am learning and will probably continue to learn through this whole process is that when you give yourself time to process things, they become less scary and you become more willing to accept that although things will be uncomfortable for a short time, they won’t be uncomfortable forever. When I went to the original Oncology appointment back in September, the Oncologist told me I would lose my hair, have yucky chemo, and potentially have to have my ovaries shut down, and I freaked out. I was dead set against chemo from day one of my diagnosis. I’ve slowly learned that every time I get new information, whether it’s a pathology report, or treatment plan, I have to give myself time to process it, and then after a few days, I let myself decide if it’s really worth being upset over it. In the moment, if I let myself, I tend to react based on my emotions, not logic. Now, I know that I have to give myself time to process everything throughout this whole situation or I will not necessarily make the best decision.
I still learn, daily, just how much I can handle and still function well enough to take a doctoral level Composition class, see friends/family, and maintain a household (with the help of my husband), on top of navigating a cancer diagnosis. I continue to be amazed at the level of uncomfortableness I’m willing to put up with just so that I can lower my risk of recurrence. I hope I never get cancer again, but quite honestly, the worst part of this whole thing isn’t all the treatments, it’s the unknown. Now, I know what to expect and have educated myself, I feel way less afraid of treatment.
Regarding Hiking
One final note, I was excited to hear that my Medical Oncologist encourages exercise throughout chemotherapy. I have a few more weeks of restrictions due to my surgery (three, to be exact), and then all restrictions will be lifted. Winter is coming, and I fully intend to hike while receiving chemo, as long as I feel physically capable. I will, however, modify what I do, because it wouldn’t be smart of me to do a long, remote hike in winter, especially while receiving chemotherapy. I would love to do at least one 4k this winter, though. I will have to bring my backpack with me when I have the port placed in my chest so that I can make sure it’s not going to be in the way of my straps, as well.
Everyday I am thankful that I have early stage breast cancer. Everyday I realize just how darn lucky I am that I am not facing metastatic breast cancer. If there is one thing “Pinktober” has taught me, it’s that I am so lucky, but there are many women who aren’t. It breaks my heart to see these terminal cancer patients go through one after another round of harsh chemotherapy only to have their cancer come back. I pray I never have to face what they’re facing and I will do my absolute best to lower my percent of recurrence to as close to zero as I can.
