A lot has transpired since my last blog post. I'll give a short recap for those who are interested. After meeting with my surgeon, Dr. Wagner, on Halloween, I left with the understanding that my future treatment plan included radiation and ovarian suppression. I was considering the clinical trial for radiation, which gave me the option of having 4 weeks of treatment instead of 6 weeks. But when I went to my oncology appointment, my oncologist, Dr. Satelli, explained that she did not think I was a good candidate for radiation or ovarian suppression. I was super confused, as I'm sure you can imagine. Over the next few days, several conversations took place between my doctors, as well as a team of doctors at what they call "tumor conference". The team decided that I would benefit from both radiation and ovarian suppression. So back to where we started!
My surgeon recommended I meet with a radiation doctor, Dr. Mitchell, who is fairly new to KU. She moved here from MD Anderson (a major cancer research hospital). Because of all the confusion/conflicting opinion about whether or not to radiate, my surgeon thought I should sit down with the best of the best. And she was right! I adored Dr. Mitchell and she helped me to understand why it's so important for me to add radiation to the next phase. In short, a woman of my age with a tumor of my original size/type has a 25% chance of reoccurrence without radiation. If I could insert that emoji with the big eyes here, I would! Holy cow! 1 out of 4 women in my situation will have reoccurrence? I am not at peace with that number. Luckily, neither was my surgeon and neither was this doctor. Women in my situation who receive radiation treatment have roughly 9% reoccurrence rates. So 9% is closer to the number I'm looking for, but still not ideal. By adding 10 years of ovarian suppression, my chances for reoccurence are at about 4.5%. While that number is still higher than I'd like it to be, I feel strongly that it's important for me to do everything I can to decrease my chances of this coming back. If I have to fight breast cancer again, I will absolutely put the gloves back on and enter the ring. However, if I can avoid ever going through this experience again, I would like to do so.
Dr. Mitchell was so thorough with me, explaining that the radiation situation with my dad (see previous blog post) is not likely to happen to me. It's not out of the realm of possibility, but my chances are less than half a percent. We discussed the 4 week trial in great detail and because she is co-sponsoring the trial with Dr. Wagner, she could not offer me her personal opinion. But I decided to go for it! I mean, if Dr. Satelli doesn't even think I need it and these two doctors think I do, then surely 4 weeks is enough, right?! Both Dr. Wagner and Dr. Mitchell told me that the preliminary data from the trial is really good. All the numbers look better in the 4 week trial than in the 6 week standard of care (reoccurrence rates are lower and side effects during and after treatment are also lower).
Because Dr. Mitchell practices in Kansas and I want to get my treatment up north, I will have 2 radiation oncologists working together for my treatment plan. A few days after my meeting with Dr. Mitchell, I met the other doctor and got all set up to begin radiation next week. I even got 5 new tattoos. Eek! I've never wanted a tattoo, but now I have 5 tiny black freckles they'll use to line up the machine properly. After that tiny tattoo experience, I feel it's important to note that I never intend to get a tattoo for fun. I mean, seriously, all of you crazies... that needle is not a joke! Once I begin radiation, which should be Tuesday or Wednesday of this week (we're waiting on insurance) then I'll receive 20 treatments every weekday, until it's done. I'm really hoping to be done by Christmas, but if we don't get started until Wednesday, that'll throw me to December 26th. Come on insurance!
So the other big part of the next phase of my treatment includes ovarian suppression and tamoxifen for 10 years. Because my tumor was fed by estrogen, it is important to block any remaining cancer cells from feeding on any estrogen. Hopefully there are no cancer cells left, but there could be, we just don't know. From what I understand, the tamoxifen works as a blocker, not allowing cancer cells to feed on the estrogen in my body. Some doctors think tamoxifen is enough protection. Dr. Wagner does not agree, she feels that it's very important to suppress my ovaries, which prevents them from producing any estrogen at all. So rather than relying on the tamoxifen alone to block the estrogen, we're going to stop the estrogen plant altogether so that any cancer cells feeding on estrogen will die of "starvation". I'm sure this is a very basic and probably oversimplified version of things, but it's all I know!
I met with the nurse practitioner to get educated about the ovarian suppression. And to be honest, I'm the most nervous about this part of my future treatment plan. Without going into all the details, I will be in medical menopause. It will happen to me overnight. In fact, they said some women say they wake up the next morning and feel like they've aged 15 years. The slowly dissolving pellet they will place in my lower belly each month will keep me in medical menopause every month for the next 10 years. I could (probably will) struggle with hormonal issues, especially for the first 3 months or so. The issues include mood swings, depression, hot flashes, night sweats, vaginal dryness, low libido, weight gain, bone loss, etc. I'm hopeful that my body regulates itself quickly and efficiently because I am pretty nervous about some of these side effects. The biggest fear I have for the short-term is the mood swings. I even told the nurse practitioner that I'm usually a pleasant person and I enjoy life. I'm worried that I will swing between sadness and rage so often that I will struggle to feel joy. She told me to be patient with myself and do my best to give my body time to regulate itself. There are medications I can take for nearly all of the side effects listed above, but she said it's best to try to make it through the first 3 months or so because many of them may not be as severe as my body gets used to the lack of hormone. What most women experience slowly, over the course of several years, I will experience in one day. She likened it to hitting a hormonal "brick wall". It's likely that I will feel upside-down for awhile. That being said, I've talked with several women who have had hysterectomies, which is a similar experience, hormonally speaking. Many of these women said they had little or even no side effects after surgery. I'm also hopeful that because I've been in medical menopause through my chemo, maybe my body won't be as shocked as it would have been otherwise. When I asked the nurse practitioner if most women in my situation make it through the 10 years, she said some do and some don't. It's up to me how long I want to continue ovarian suppression, but the research shows that 10 years is the most effective. Right now, that is. My endocrinologist who I see because of hypothyroidism reminded me that medicine is always changing and they could come to me in 3 years and say that research shows that 5 years is sufficient. He also said he thinks I'm doing the right thing and he fully believes my body will regulate itself in time.
So, to stay true to my style of sharing everything, I'll be completely honest and share that I'm worried about the next few months. I'm worried that I'll be a terrible mother because my moods will be all over the place. I've dreamt my whole life of raising a family and now that I'm here, I worry that I won't be able to do it the way I want to because I'm cranky. I worry about the effects of my ovarian suppression on my marriage. I worry that my job will be even more stressful because I feel like a tornado inside. I worry that my bones will deteriorate by the time I finish 120 injections. But as I've gotten used to the idea, I have decided a few things. Whether or not I'll experience these side effects and the degree to which I'll experience them is not within my control. I may have to work really hard to choose my attitude, but I can do my best. I've already discussed my potential crankiness with my girls and Ryan. I'm going to allow myself the grace to take a time out when I need to. I also know that God has not failed me yet. Not even once. So I have complete faith that He will see me through this potential trial, just like He always has. I will take this experience one day at a time, maybe even one moment at a time. Those are the only things I know.
The other hormone at play in my cancer is the HER2 hormone. I've already shared that I'll receive herceptin infusions until June of 2019. Once I finish the herceptin, I can have my port removed and then I'll take an oral pill that blocks the HER2 hormone for another year. But I did receive some bad news about the herceptin infusions. When the tumor conference met, they decided that since I responded so well to the drugs given at chemotherapy, they wanted me to continue the perjeta along with the herceptin. That's the icky diarrhea drug. As if that isn't bad enough, because I haven't been on the perjeta for the last 2 infusions, I have to get the "loading dose" again. In case you forgot, I learned after my first chemo that "loading dose" is code for "double dose". Yeah. The last time I had the loading dose of perjeta, it was not pretty. Not even a little bit. It was the worst 3 weeks of the entire chemo experience. And now I have to do it all again. Except this time, my bowels are already loose because they still haven't recovered. And, to add insult to injury, the carboplatin and taxotere chemo drugs constipated me, so they always worked against the perjeta. But now, it's just me and my Imodium! Actually, I'm going to take the prescription lomotol because I just don't think I'll make it without something stronger. I've already decided that if things aren't going well, I'm going to request to get IV fluids. And because I'll need to be able to drive to the hospital to get radiation every day, I have to be able to leave my house. Eek! What if I have another experience like the Dollar General Hell I experienced earlier?! Dear Lord, please, please help me. Amen. I've already decided that it'll be what it's gonna be and I'm just gonna roll with it. There isn't any other choice!
The last thing to report is that I'll be returning to work on December 3rd. Hopefully! That gives me one week to get used to the ovarian suppression and to get my bowels under control after the perjeta loading dose. I should also have nearly a week of radiation under my belt by then, too. It's going to be a crazy time, but I'm just gonna bite the bullet and get back into the swing of things. I hope the students are able to handle Mrs. Weaver without estrogen! Heck, I hope I can handle Mrs. Weaver without estrogen! Haha!
So if you see me after Monday and you think I seem off, please know that I'm trying. I apologize in advance if I'm not much fun to be around or if I lose my cool and say something I shouldn't. This is a learning time for me and I'm hoping I catch on quickly!
In an effort to document my journey for myself to look back on later and for others who may walk this road in the future, I wanted to share how the hair re-growth phase is going. I've been using RenPure shampoo and conditioner with biotin and collagen. I've also been spraying my hair with an essential oil concoction dubbed "Mermaid Hair" which is a mix of rosemary, cedarwood, lavender, witch hazel, and water. I'm not sure if it's working or not, but it sure smells good! I've also tried taking biotin gummies, but they made me feel nauseated, so I ditched them for now.
The picture below is 5 weeks post-chemo. It's actually deceiving to say "5 weeks post-chemo" because really this picture was taken 8 weeks after my last infusion. Since my hair continued to fall out for the entire chemo cycle (3 weeks), I didn't start counting weeks until after the chemo cycle was over.
The picture below was taken after my last chemo cycle. I hadn't shaved my head in a week and I never intend to shave it again!
This was taken on my last day of chemo. My head was freshly shaved!
One last thing to share, in case someone needs this in the future. I started using a scar softening oil about 3 weeks after my surgery. To make it, I filled a 2 ounce glass dropper bottle with 40 drops of lavender, 40 drops of frankincense, and filled the rest with fractionated coconut oil. It smells amazing and my scars look great! I just massage the oil into my scars twice daily. I'm supposed massage them twice daily anyway. If it weren't totally inappropriate to post a picture of them on here, I would show you how good they look! Haha!
I have several prayer requests at this time, but I'll try to keep the list short and sweet so you can remember to pray for everything on it. I sincerely appreciate your prayers, friends!
- Please pray that the cancer does not return. Ever.
- Please pray that I experience few/no side effects of the ovarian suppression and that my body returns to a "normal" feeling quickly
- Please pray that radiation will be uneventful, both now and in the longterm future
- Please pray for an easy transition back to work for my family, my students, and myself
- Please offer a prayer of thanksgiving to God for all that He has done in my life and through my life
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