I won my class at the horse show in Raleigh today. Special thanks to my dear friend AW, who jumped my horse today and won both of those classes. Result: division champions. What a truly touching team effort. Special thanks to everyone from Irish Oaks and my friend M today.
I’m heading out this weekend to my favorite kind of escape. I’ll post updates, but here is a photo from my first ever trip to this place:
- A woman died whose breast cancer story I’ve been following online
- One of my two “sisters” started chemotherapy, and the other one starts next week (they may not even know how important they are to me. They are two friends of friends whom I’ve never met in person; we only know each other on Facebook. They were diagnosed with BC right before me and are just days or weeks ahead of me in treatment and I consider them my trailblazers … AW and JO)
- I got to ride my horse this week and for those blissful minutes everything felt like the old normal
- I had to call a friend to come over and take my trash bin down to the road because I cannot
- I had to ask other people to tack up my horse because I cannot
- I started occupational therapy and I have the three easiest exercises on the worksheet and can’t even do them all the way … YET
- I changed my dental appointment because you’re supposed to get that done BEFORE chemo
- I made an appointment to get the craziest short hair cut and color ever because I’m taking control of my hair before it falls out
- I started haggling with my insurance about how to get my day-after chemo shots from a pharmacy so they can be administered at home … that’s a to-be-continued
- I more thoroughly contemplated how to stuff my bra and whether or not I was going to do it for my return to work next week (still undecided and still primarily ambivalent, but want to make sure I don’t set myself up for regretting NOT stuffing it)
- I truly read the side effects list for the chemotherapies I will be getting
- I more wholeheartedly started researching the long-term side effects of the hormone therapy I will be taking for 5 years and the long-term consequences of early menopause
- I asked people to get flu shots simply because of my needs
- I have, on multiple occasions, had to remind myself to be gracious when people offer to help me or give me unsolicited advice. Now is not the time to be stubbornly independent or self-sufficient
- I failed to get Round 2 of thank you notes out
- I didn’t have the guts to ask someone to clean the chicken coop
I had to wait more than two and a half hours, but I did see my medical oncologist today and we had a nice long chat and I have a treatment plan!
I will be doing four chemotherapy treatments spread over the next few months. I will not be having any radiation treatments. After I finish chemotherapy, I will have monthly shots for five years to induce menopause while taking a type of hormone therapy called an aromatase inhibitor. My type of breast cancer cells tested positive (100% positive) for estrogen receptors, and this hormone therapy combined with induced menopause essentially starves any remaining cancer cells from the estrogen they thrive upon.
OK. So this is basically the course of treatment that I had been hoping for since it is what had been described to me as a best case scenario if I ended up with negative lymph nodes and negative surgical margins. There is the wild card of the Oncotype Dx test (more at the end of this post on the test) bringing back some off-the-charts risk results due to the rare neuroendocrine features on a small portion of my tumor, but the chance of that is very small — so small that we went ahead and scheduled my chemo treatments: October 10, October 31 (spooky poison!), November 21, December 12. So I might have like the worst appetite ever for Thanksgiving and even Christmas and I will be bald by the end of this and in the middle of winter. But I will be DONE WITH CHEMO before the end of 2014. Of course, sometime as early as February I will be cleared for reconstruction … and I will strongly be considering a preventative mastectomy of my left breast at the same time.
Dear readers, I do have a couple things to ask of you:
- Please, if you will come in contact with me between now and the end of December, consider getting a flu shot. I know there are some small risks associated with getting a flu shot and if you decide not to get one, I will totally understand. But any infection could land me in the hospital and/or delay my treatments, and the timing of the treatments really matters here. You can get a flu shot at any CVS or Walgreens, and I will be happy to pay for it or go with you and hold your hand if you are afraid of needles. Also, please mention this flu shot idea to any of my coworkers or friends who may not read this blog.
- I continue to get a little ruffled when people tell me I’m going “to be fine” or that chemo will “be no big deal.” If that’s the case, then let’s all take chemo together. It’s on Fridays! It will be a new spin on happy hour. There are serious risks with chemotherapy, including a small risk of it causing leukemia and also strong risks of long-term side effects that can dramatically impact your quality of life (but hey, you’re alive!). Early menopause also has numerous dangers such as severe bone loss and other more delicate matters suitable for my Confessions series. Instead of saying you know I will be fine or that you know I will get through chemo without any problems, maybe just say: “I hope that you don’t have any major side effects from the chemo” or “I hope that your chemotherapy treatments go as smoothly as possible.” And, as always, you can say: “I read your blog and I want you to know that I care.” Everyone is affected differently by chemotherapy and there is no way to know that I will be fine or unaffected by side effects. We can hope for it, but no one — not you, not me, not my oncologist — knows that I will be fine or that it will be no big deal.
- By the time I have induced early menopause, we can all say aloud that we hope I don’t experience severe irritability because that just won’t be good for anyone. If I experience weight gain, please encourage me to buy more horses and ride more and you can totally say it is because I look like I need the exercise. 🙂
The chemotherapy drugs I will be getting infusions of are taxotere and cytoxan. If you want to join in for Friday happy hours, let me know. I am going to feature the drug warning pamphlets I was given about these in a future post. They include in the drug overview statement that taking this medication “will make you feel generally unwell.”
DETAILS FOR THOSE WHO LIKE DETAILS:
I had been thinking I would be getting 10 years of Tamoxifen (another anti-estrogen hormone therapy only for pre-menopausal women), but apparently research shows a 2-3% advantage of inducing menopause and taking an aromatase inhibitor (A.I.s can only be given to menopausal women). I plan to look up all this research later and post about it.
You may recall that the final pathology report after my entire right breast was surgically removed showed that my tumor was “biphasic” and while primarily comprised of the most common form of breast cancer, it also had two other types of breast cancer cells present — invasive lobular and neuroendocrine, the latter of which is extremely rare. My oncologist said that while there isn’t a whole lot of research to guide us, the research we do have points to treating based on the primary tumor type. We also decided to have an Oncotype Dx test run on my tumor tissue — probably on the neuroendocrine portion. This test is typically used to determine whether or not to give chemotherapy to patients with negative lymph nodes. Yes, I had negative lymph nodes, but my doctors recommend that I receive chemotherapy no matter what because of my young age. And, while there is surely no “easy” chemo, four treatments is a relatively low number of doses and they will be spread three weeks apart and are not at all the most wicked of the possibilities.
Anyway, the Oncotype Dx test basically examines the genetic features of the tumor (please, I haven’t double-checked all my facts here because I wanted to get a post up asap) and gives an indexed score indicating the likelihood of the breast cancer to recur, which is then associated with the anticipated efficacy or effectiveness of chemotherapy … for some people, this index shows that there may be little to no benefit of chemotherapy. What we are really looking for in my results will be whether I index off the charts on the high side and then we may consider a more stringent chemo course or possibly radiation. This is all unlikely, but fortunately my oncologist was leaning toward doing the test, too, and I am always pro the “more information” option, and then a kind radiation oncologist stopped in and also endorsed this idea — this radiation onc is a friend of loyal blog reader Ms. AM and I was grateful to have her weigh in at just the right moment. Thanks for the referral, AM!
Music with lyrics is like walking through a minefield these days. Happy songs make me sad and sad songs also make me sad.
I covet ignorant bliss.
I seek distraction like I am addicted to it. But I am hyper-vigilant about modes of distraction — many have the same pitfalls as those songs on the radio.
Since finding out that I have a mixed type tumor that accounts for less than 1% of all breast cancer cases, I have been catapulted back into the state of mind that occupied my months-long diagnosis period: terrifying unknowns and days and days of waiting for even a shred of information to uncloud even one small part of those unknowns. It’s quite a rollercoaster, as I was riding high for a while knowing that I had negative lymph nodes, which typically is a top indicator of a “good outcome” (i.e., lower recurrence rate, long overall survival rate). My recovery from surgery was so quick and so strong that I was sure it was a sign that I would tolerate future treatment well and then have a very strong chance of being in remission the rest of my life and never facing cancer again. I felt so strong. So positive.
But these last few days, my mind swims and grasps to draw conclusions. My grandmother, who was diagnosed in her early 30s, had metastases by her late 30s and died in her early 40s — perhaps my cancer and her cancer are the same type? After all, isn’t there a lot of truth to the whole “skip a generation” theory with breast cancer? So maybe there is a strong possibility that I will go through treatment for the next 3-6 months, then have up to 5 years of remission, and then have metastases, which is basically terminal (metastases is when breast cancer spreads to other parts of your body such as your bones or your liver). How would I live differently if I knew I had terminal cancer? I cannot describe what it feels like to encounter this question.
Wait. Wait. Wait. I should ruminate on that only when and if that situation arises.
But sitting at lunch yesterday with my step-daughter and a friend, we were blissfully giggling over milkshakes and a successful morning of shopping like only girls can do … I suddenly got teary eyed and wondered if there would be a day when they would look back on this moment as a memory of me after I had died, and my heart broke for those whom I love.
There is also the chance that today’s modern treatments include exactly the measure that will stop my cancer in its tracks — maybe it’s chemotherapy, maybe it’s radiation, maybe it’s hormone therapy. Perhaps, if my cancer is like my grandmother’s, one of these weapons are something she didn’t have access to, and will make all the difference for me.
My appointment with my medical oncologist is this coming Wednesday, and I will likely hear then what the “tumor board” (aka, conference of Duke oncologists) thought about my unusual case and how to treat it. From what I have read (actual study is here), my tumor (primarily invasive ductal carcinoma with lobular and neuroendocrine features) accounts for less than 1% of all breast cancer cases (my surgeon mentioned this statistic, too). My type of breast cancer has generally poorer outcomes (meaning higher recurrence and lower overall survival) than the most common type of breast cancer. And none of the studies about my type of breast cancer have any mention of cases including neuroendocrine features, as my type does, which makes everything even more scary.
So the waiting will just have to continue until Wednesday. Maybe my doctors will have some positive prognostic news for me, or maybe they, too, will just have a lot of unknowns and I will simply have to journey forth into chemo (and possibly radiation). I anticipate lots of scans and tests to see if there is any possibility of cancer in other parts of my body, even though I have negative lymph nodes. So that means more tests and more waiting for results.
Finding all-encompassing modes of distraction will continue to be my daily mission, and I prefer to find the types that have the lowest likelihood of triggering my sad worrying mind that has such a propensity toward finding solutions or seeking information to gain clarity. I want to research and read my way to a better outcome, to a 99% survival rate. But I know that’s not out there. I do think my research helps me be a better advocate for myself in this process, but I also think there is a delicate balance between empowering myself and freaking myself out. I’m still working toward optimizing that balance.
I was very excited to be free today — nothing on my schedule and cleared to drive! I have a Mini Cooper convertible, but it is a manual transmission and I am not allowed to drive it since my right side is my weak side. So my husband was going to have to take the Mini for a while and I would take his car, which has an automatic transmission. We did the official exchange of keys last night.
I had the Mini detailed prior to my surgery so it would be super nice for hubby and the step-kids, who are kind of too big to all pile into it but they were going to make it work. Strangely, they had to jump-start it at the end of the detail session, but I just figured they did something stupid or didn’t have it in the right gear for starting it.
Well, the Mini didn’t start this morning, and my husband had to get his son to school and get to work. So away they went in the other car.
C from Irish Oaks came to the rescue — in less than an hour! He jumped the Mini (the electric does turn on, engine just doesn’t turn over) and drove us to the dealership. I am still under extended warranty, thank goodness. They even gave me a loaner with automatic transmission. So now I am back to my freedom-filled Wednesday. Bet you can’t guess where I’m heading.
It was an information-packed post-op visit to see my surgeon at Duke today. Overall, the news was good. I was an exceptional patient in two ways today:
- The healing of my surgical site was described as “A++” by the nurse. My drain was removed, yay! And it was not as painful as I feared.
- My main tumor is highly unusual. “You’re special,” my surgeon said. That makes me nervous. More on that later.
Other good news from my visit:
- Surgical margins were negative. This means there was at least 2mm of tissue that had absolutely no cancer cells along the outer edge of everything that was taken out. Mastectomy patients who have positive surgical margins typically need to have radiation treatment.
- They double-checked the lymph node that they took out and it was negative.
- I can drive now.
- I can ride in one week, but no jumping for 4-6 more weeks.
- I got a post-mastectomy bra, which is not a prosthesis but more like a soft supportive post-surgery bra that has a pocket to put a customized little pad into for the boob-less side. I can get a prosthetic bra in 4-5 weeks. Insurance pays for it all, too.
- I need to find a physical therapist and start PT here locally.
So, they also did a full pathology on all of the breast tissue they removed. They confirmed the small secondary tumor. The main tumor came in at 2.2cm and is highly unusual in nature. The most common kind of invasive breast cancer is ductal invasive carcinoma, which accounts for about 80% of breast cancers. The second most common is lobular invasive breast cancer, which accounts for about 10% of BC cases and it is considered more aggressive. It turns out that my tumor primarily has features of invasive ductal carcinoma, but also has some features of lobular invasive and also has features “suggestive of neuroendocrine differentiation,” which is very rare in breast cancer. Putting together these different features of my tumor means my tumor is called “biphasic.” My surgeon said it has no clinical significance surgically. But it is the reason why they are taking my case to the weekly conference of Duke breast cancer oncologists to discuss my treatment plan. Apparently, this is enough to potentially mean I will get radiation. When my surgeon told me I had negative margins, I was like, “Great! This means no radiation, right?” But he said that because my tumor is so unusual, they want to discuss my case at conference and I could end up needing radiation. That shook me a bit — I thought negative lymph nodes and negative margins were my ticket to a very straightforward process from here on out.
So. I think that this is all kind of scary. The big, bad, ugly uncertainty of cancer, filled with its complexities and unknowns from the diagnostic phase, are back, to an extent. I don’t like that at all. It will be another week til I get more answers — I meet with my medical oncologist the morning of Wednesday, Sept. 24.
The stats that breast cancer patients compare — like your own trading card:
Histologic type: Ductal with lobular and neuroendocrine features
Stage: I think Stage IIa … but maybe a BC patient can tell me why my M was listed Mx? My pathology report listed it as T2N0Mx (the T refers to tumor size; the N refers to lymph node involvement; the M refers to distant metastases, i.e., cancer spreading to other organs … I sure wish they would have written M0 … does this mean they are worried that my weird tumor is a sign that there is cancer in other parts of my body? I noticed this in my pathology report AFTER I left the cancer center, so I didn’t ask when I was there).
Grade: 2 (Tubule-3, Nuclear-2, Mitotic-1)
Size: Approximately 3cm (includes secondary tumor)
In-situ carcinoma present: Yes (cribriform and solid, Grade 2)
I go back to Duke today for my post-op visit. Hopefully, I will get my drain out, which reportedly is quite painful. I am also hopeful that the full pathology results will be back — they run pathology on my known tumors (previously only diagnosed through imaging and biopsy) as well as look at all of the breast tissue that was removed to see if there was more cancer. So far, we knew of two tumors — one that was about 2.4cm and another that was about 0.4cm. The MRI also showed 2-3 additional tumors immediately adjacent to the biggest one, but they had not been biopsied or confirmed as cancerous. Also, my oncologists have always reminded me that there is a small chance that this could be one contiguous tumor spanning 7cm, which would be enormous in the context of breast cancer. I am really hoping for good news today!
I will also be seeing my medical oncologist today (I think). He is the person who will oversee my chemotherapy treatment, so perhaps today I will start to get a better idea of what that treatment will look like and when it will start.
Also, to all of you faithful commenters: My spam filter was working overtime recently and filtered out a lot of legitimate comments. I have approved them now and I apologize if your sweet comment didn’t post in a timely fashion, but I did see them all! Please keep commenting! I love comments!
The New Me
I have spent a fair amount of time in front of the mirror or just lifting my shirt lately. Sometimes, it is with detached fascination. Sometimes, it is with this soft sadness for what I have already been through and what still lies ahead. Other times, I simply feel strong and as though my new facade accurately reflects the jagged path that I have conquered. And yet other times, I am in awe of my body’s resilience and my surgeon’s prowess.
Post-surgery, I have had far less pain and far more energy and mobility than I expected. I was up and about the first day. I visited my horse by Day 3. I went out to dinner — surgical drain discretely tucked under my shirt — on Day 5. (Apparently reports that I went out to dinner dropped me from “urgent need” status on some prayer lists.) I definitely needed a good 2-hour nap to recover from each of these outings. Furthermore, my surgical site looks amazing. Granted, it is covered by a thin strip of gauze and waterproof seal, and stretches a good 7-8 inches from the center of my chest to under my armpit. There is absolutely no bruising. I rather expect the scar to be, in its own way, beautiful. Because the lack of trauma that I have experienced is mind-blowing.
Strangely, the most painful part of my recovery has been a severely sore throat. It has gotten so bad that I often cannot finish a meal. I think this is because there was some trauma to my throat from being intubated during surgery, and then having to sleep on my back ever since (which, when I sleep on my back, I tend to snore — shoulda made that a confession post, haha). I am talking seriously painful throat (no temperature, no other signs that it could be strep or something else). I called my surgeon’s office and was assured I am doing all the right things — saltwater gargle, lozenges, herbal tea (thanks for the emergency delivery, M!), eating soft food (pizza IS soft). I’m hoping for a better treatment option to be presented during my post-op visit tomorrow.
Post-Surgical Life is Busy
My social calendar has never been so busy. I have had so many wonderful visitors. And the cards, gifts, food and flowers — oh my goodness! You people are good. I plan to do some serious thank-you card writing. (Oh senders of the Shakespeare’s pizza (!!!!), please send me your addresses.) I just can’t say enough about the outpouring of love. Thank you. Also, between my exciting outings, visitors, opening presents and cards and trying to eat all this food, I hardly have any time to blog. Sorry for the silence these past few days. You all keep me busy!
Cats Stole My Drain Paraphernalia (warning, somewhat graphic description)
Three times each day, I have to empty my surgical drain (which is a long piece of clear tubing coming out of the side of my abdomen and emptying into a plastic grenade-like vessel, which you can compress to create, er, suction. It’s actually not as creepy as I thought it would be and I love that all the stuff that could create swelling is outside of my body instead of inside it! Anyway, I have these tiny plastic little medicine cup-type things (think the cups you take cough syrup out of) and I have to empty my drain into it and measure how much comes out. When I get to under 30cc per day, then the drain is ready to come out. One morning, I got up and 1 of my 2 measuring cups was missing. I have had a lot of people here helping me out and I figured someone put it away or threw it away. But the next morning, the other cup was missing! I had a total meltdown because this cup has super exact measuring lines, including, like 10cc, 12.5cc, 15cc. Also, I just lose my cool very easily these days. I harassed my wonderful husband, a dear friend who had helped put dishes away … until it dawned on me. Our cats turned 1 year old last month and sneak onto the counter whenever we are not looking and can turn anything into a toy. I searched under every piece of furniture and sure enough, in the back corner behind the sofa was one of my measuring cups. Crisis resolved.
… I really do have a lot more social commentary on mastectomy, breast reconstruction, et al, that I would like to share. I’m not ready to wax thoroughly on these topics yet, as my feelings about these things seem to evolve each day. I am so surprised at how peaceful the evolution of my thoughts on this have been — it seems like losing a body part that is supposedly so critical to your gender identity would be more acutely traumatic, but for me I just have this sense of soft unfolding. That’s the best way I can describe it: a soft unfolding of thoughts and gentle unfurling of new or transformed beliefs. I am actually really thankful that I have been given this extra time to make my decision about a reconstruction plan and a preventative mastectomy on my left side. Knowing how well I weathered this first surgery gives me a lot of bravery as I look ahead to potential additional surgeries.
…til we meet again — in blogosphere or in person — I am so grateful to each of you who read this blog. Peace to all of you.
I continue to have a strong recovery and accompanied my mom to Target today! Such a therapeutic place.
It is a little bit strange to be walking around entirely asymmetrical in public with a drain tucked under my shirt, but I am so happy these days that I shake free of that inhibition pretty quickly.
I will have several visitors this evening. I feel very fortunate to be doing so well, and I know that all of the positive thoughts and prayers you have sent have truly played a role in my healing. Thank you.
My lunch: Lentil soup and ciabatta from Fresh Market, and delish homemade soup from my mother-in-law. Two soups are better than one.