I had my 3 month check this week. And the good news is that I can start spreading out my check-ups now. That means my next one will be in 4 months. Or at least it would be in 4 months if I weren't doing the clinical trial. Since it takes place every 6 months, I'd have to come in in 3 months for it, and then a month later for my regular check... So we're going to split the difference and I'll go in in 3 1/2 months. I'm hoping after that I can push it to 5 1/2 months so I can do both at once again. Let's see how that works!
The worst part of this visit was the blood draw. I really miss my port! As those of you who read Facebook know, this draw did NOT go well. I know I'm a kinda tough stick, but this was ridiculous. I have three holes in my arm, but each of them involved multiple in and out, back and forth, up and downs. I am ridiculously bruised--especially on my wrist! Who ever heard of taking blood from your wrist?
Other than the blood draw, I had a very good appointment.
My platelets are stable at 84K. All other CBC measures were normal--which is unusual for me! My hemoglobin level is in the normal range, so I can stop iron supplements for the first time in over 2 years.
We talked a lot about Femara and the pains it's causing me. I'd read up a lot about a study done in the mid 2000's called BIG 1-98, which compared 5 years of tamoxifen to 5 years of Femara. In addition to a general "Femara is more effective" result, when it's broken out into several groups that I fall into, the results are even better. For example, women with invasive lobular carcinoma (which I had--much more rare) had even greater effect on Femara than women with invasive ductal carcinoma (the most common invasive BC). There was also concern that switching young women from tamoxifen (used in pre-menopausal women) to Femara might not be effective since sometimes they were thrown into menopause unnaturally by treatment. But that is not the case--it's even marginally more effective in "younger" (defined as under-55) women. So I am convinced that this is the med for me, and I need to learn to manage the side effects. Dr. Shah says that (at least at this point) research shows there's not sufficient benefit to be on Femara longer than 5 years, so I will be on it for 5 years (as opposed to 10--although I'm sure research can always change that). I can do this for 5 years! The side effects that I'm dealing with are mainly three things: joint/bone pain, tiredness/exhaustion, and trigger thumb.
Trigger thumb is annoying--especially first thing in the morning. If it gets really bad, I can get a cortisone shot, but for now it's doing okay with me just massaging and stretching it. Luckily it's on my non-dominant (and non-affected) side. I'm considering trying a brace for nighttime, as keeping it straight overnight is supposed to help. It's worst in the morning--painful as well as annoying.
Dr. Shah isn't convinced that my level of exhaustion is due to the Femara. She wants me to have my thyroid levels tested (again--had them done about 5 years ago). More doctor appointments... But Dr. Shah also said using caffeine is fine. So I've upped my coffee consumption and just can't do late nights (and by late nights, I mean out after 9:00 pm) or early mornings.
The biggie is the joint pain. I'm having the worst pain in my right knee, which I know has osteoarthritis. But the rest of me hurts, too--my back, hips and legs, especially. I have permission to take Advil and Tylenol if needed, but Dr. Shah says I really need to exercise--and that doesn't mean walking. She said at least 5 days a week of cardio for 30 minutes. She promises it will help, but I hate cardio. Still, I can't keep up with this level of pain, and I don't want to stop the Femara, so I'm trying. I re-started C25K on Wednesday night, was really sore Thursday morning, did 30 minutes of the elliptical Thursday night, and can barely walk this morning. <sigh> I am, however, going to an informational meeting next week about Team Phoenix--a triathlon training program for breast cancer survivors. I've heard fantastic things about it, and I hope that belonging to a group like that will make me work at a level I need. Besides that, they have PT's and athletic trainers who have experience with cancer patients and I think that will be super helpful.
The other good thing from my appointment is that I have permission to try to go w/o my compression garments and to "cautiously observe" my hand and arm for lymphedema. One of the odd side effects of wearing a sleeve is that I wasn't using my right hand/arm (for fear of getting my glove dirty and/or not having grip on that side) and my strength has really gotten poor. So hopefully now I'll use my right arm more. It feels very strange! I'm still wearing the nighttime garment and will for a couple weeks at least to make sure that the lymphedema doesn't return. If it's okay, I'll try to stop the night one, too. I'll still always have to wear them for high risk activities (like flying), but it would really be nice to not have to wear one in the summer heat.
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Finally, the other thing that I've been doing cancer-related is mentoring.
When first diagnosed, I didn't want to tell local people until I knew "everything," including my treatment plan. But I needed someone to help me figure out what was happening next and what the tests meant and what options existed. I had an online friend who was my go-to and I couldn't have made it without her guidance and no-nonsense advice. Since that diagnosis, I've been able to share advice with other long-distance friends. Though I wish it weren't the case, I'm so glad to be able to pay it forward.
When I let the kids' teachers know about my diagnosis, one of them told me about ABCD (After Breast Cancer Diagnosis), as her mother was a mentor. I reached out and was paired with two mentors who were wonderful. I contacted them a lot until word got out locally and I switched much of my dependency to locals. I was trained to be an ABCD Mentor in November and was able to connect with my first mentees this month. The training was emotional (re-living everything) and yet very good. I was a bit afraid that mentoring would do the same again. And to an extent, it did. But overall it is a really Good Thing. I am able to think about what I've been through differently, this far out. And I can say, without a doubt, that treatment sucks, but it's doable. It's awful, and scary, and emotional and really scary and totally doable.
As I said, when word got out, I was surrounded with support from local survivors/veterans. I connected with women who I'd known, but not shared much more than a passing hello with for years. (Once you're in "the club," you understand.) One of these breast cancer veterans and I met for coffee last month, and found out that an employee at the coffee shop is currently going through chemo for breast cancer. We decided to do a monthly "Cancer Coffee" (we're open to a friendlier name suggestion :)) and if you're a BC veteran and live in the area and want to join us, email or message me and I'll send you details.
The new friends I've made (and friendships I've strengthened) are yet another silver lining. I'll take it!
