I mentioned a few days ago that I had seen my medical oncologist, and that she had given me my prescription for Tamoxifen. I also mentioned that she said I could start anytime, as long as I started before the three month follow up. I’ve had the prescription paper sitting next to my recliner, with the thank you letter I wrote to my friend Susan, and the check for the Boy Scouts for the Christmas tree pick up they did early in January. The two items for the mail are STILL sitting there, but tonight Ken took the prescription up to Walgreen’s to be filled.
He just returned, and let me know that the Tamoxifen would be ready later tonight, and we could pick it up tomorrow. Now, I’m not especially worried about side effects, and from everything I’ve been reading, most patients don’t notice any SE’s right away. But I’d decided, sort of subconsciously, that I would wait until after Valentine’s day to start the regimen. I told Ken this, when he gave me the prescription status, adding that he didn’t expect I was in such a hurry to start that I would need it tonight. He looked at me for a beat, and so I felt the need to explain myself, and why I wanted to wait until AFTER Valentine’s Day.
He told me “The best Valentine’s gift you could give me is to stick with the program.”
Can you believe that guy?
I have a confirmed date for my port removal procedure. They call it a conscious sedation procedure, which means I’m awake through the whole thing, but I’m not “don’t freak out” juice during the procedure. It’s not happy juice, that’s for darn sure. I sure didn’t feel happy when the put that port in me (though I’ve been very grateful they did – can you imagine the beating my veins would take if I had to do chemo that way? Yuck!), like I was rolling down the hall to the OR for my mastectomy. I wasn’t exactly singing, but the nurse did say she’s never seen ANYONE as happy to go into surgery as I was. That was some good juice! But the conscious sedation stuff just keeps you sort of calm and distracted during the procedure. Waiting for the x-ray to confirm the placement was correct, I was a puddle of tears in the hallway. Partly it was due to the fact that I was traveling to Vancouver to testify in a murder trial later that day. But the nurse told me that the goofy juice also makes you very emotional. Great.
I don’t feel pain when the cut into me or stitch me up. But I felt pretty crummy in the recovery bay after the placement procedure, so I expect I’ll have a similar experience next Tuesday when they take this thing out. There will also be blood, and sutures, and gauze, and lots of ugly bruising.
But at least we’re moving forward.
We met with the medical oncologist yesterday, and I received my prescription for Tamoxifen. She said I could start any time, as long as it was before we meet again for my 3 month follow up. Ken suggested I wait until after the Superbowl, so I don’t have to suffer with some of the more common side effects, and can enjoy the game. But everything I’ve been reading on www.breastcancer.org indicates that most patients don’t notice any side effects right away. Still, I think I will wait, at least until next week.
She told us that weight gain, or at least trouble losing weight is common on Tamoxifen, as it messes with your metabolism. I also learned that chemo messes with your metabolism. Here I thought it was all because of the steroid. But no. And now I’m frustrated, grumpy, and obsessed with the unknown – again. I have no idea how my body (and mood) will react to this drug, so my mind immediately goes to the worst. I’m going to be a fat, bitchy meanie head, with out of control emotions, my daughter will be afraid of me, and my husband will want to divorce me. In short, I’ll become my mother. But that’s another story…
I can’t blame everything on my medication, especially the weight gain, which seems to be primarily settled around my waist. I gained only 14 pounds on the A/C regimen (only!), and it came off pretty fast (to be honest, I was fat to begin with). Therefore I expected that I would drop the 27 pounds I’d gained on taxol just as quickly. But I just keep on losing and gaining back the same 2-3 pounds, no matter what I do. At least it seems that way. I don’t feel that I’m doing anything different now that I was doing when I finished my A/C, except of course I’m not traveling like I was those three weeks after the A/C. I was under a lot of stress, so I also barely ate, for fear that I’d mess up my digestive system even more than the chemo did.
Thinking about it now, after the sentencing hearing was behind us, and everything about my father’s death was resolved (at least as much as it could be, for the present – again, that’s another story), I went into comfort eating mode. I wasn’t constantly nauseous from chemo, and life went back to (relatively) normal. This significant lack of stress contributed to my weight gain on taxol. I gave myself a pass to eat anything I wanted, and rest as much as I wanted. This explains why I gained 27 pounds during my taxol regimen, rather than a measly 14, as I did on A/C. This may also explain why I haven’t been able to peel the extra weight away now that I’m not having weekly infusions of chemo.
Now that I’m complete with all of my chemo and radiation, it’s time to start thinking about recovering not only from the treatment, but from my “free pass” from taking responsibility for my health and weight. I’ve started to be more mindful of what I’m eating. Not so many bagels with cream cheese, more leafy greens at lunch; however, still plenty of cream and sugar in my coffee. Some things I just can’t give up. Plus I’m crazy about Ken’s “mansangna” which he makes during the Seahawks games. I’m not kidding, it’s the best lasagna I’ve ever had. Cheesy goodness…
Since I love food, I have to believe exercise will be my saving grace to burning off the belly fat. It always has in the past – housework, yard work, walking to the store – because I can’t stand going to the gym. I feel like I don’t belong there. That’s for young, vital, in shape people. But that’s just me.
The thinnest I’ve ever been since high school, I still weighed over 140 pounds, and my face was gaunt. And I ate chocolate every day, pasta 3-4 times a week, and drank coffee with cream and sugar twice a day. The only exercise I got was walking – lots of it. Probably 20-25 miles a week and that’s no exaggeration. I was studying abroad in London, and one of my classes was Art and Architecture, which was lots and lots of walking every single week. So no one can tell me simple walking doesn’t burn calories and fat – it does. At least, it works for me.
I guess what I’m getting at is my exercise has to have a goal other than weight loss. A clean house, a decent garden, or seeing beautiful places and things and meeting wonderful people around London, Paris, Charleston, etc. My jeans fitting a little more loosely will be just a bonus.
Hmm, maybe this “bigger picture” approach is the key to my recovery from breast cancer, as well.
I have written before about my expectations for each phase of this process. You know what I keep saying – once I get past the surgery/A&C/taxol/radiation, the next part will be easy, I say to myself. Ha! As we’ve all learned by now, nothing is easy compared to anything else. Each phase is just different. You’d think I would have learned that lesson by now. But forgetfulness takes charge, and after I’ve completed everything, I found myself feeling like I hadn’t suffered enough to really call myself a survivor. Yeah, I had pain after the surgery. A LOT. But that’s in the past and I forget about it, because I have new things to deal with.
The A/C left me nauseated; the medication to help me with the nausea left me constipated; the drugs I took to protect me from having an allergic reaction to the chemo left me agitated; and the whole mess left me exhausted. Exhausted and bald.
After a three week break, we started the taxol. Ah, the taxol. How I worried about the taxol. Everyone told me that it would be different than the A/C. It had it’s own issues, though most patients have fewer issues with taxol than A/C, or at least the taxol issues were easier to tolerate than the A/C issues. Other breast cancer patients I’d read about on line said differently, that it was actually WORSE for them than the A/C. So for once I wasn’t expecting an easy ride by comparison to my experience to the A/C. But I was terrified about losing my nails.
As I have mentioned before, one chemotherapy agent has proved to be neither easier nor harder to tolerate than the other. Each is simply different. I didn’t lose any MORE hair during taxol, and the hair on my head, which started to grow during my break from A/C when we traveled so much for the sentencing hearing, kept on growing. Still no eyelashes or eyebrows, though, which makes it interesting on the rare occasions when I felt like applying makeup.
Then came radiation. By the third week, I was back on anti-nausea medication. Why would I be nauseas? The radiation oncologist didn’t seem concerned about it, and offered to prescribe an anti nausea medication, which I declined, as I still had PLENTY left from the collection I’d gathered all through my A/C. Every day like clockwork, one hour before we had to leave, I’d be nauseas. Only ONCE did I ignore it and go without the medication. That was the most miserable radiation session of the entire course, and I barely made it through without begging for a break. But that would have started the process over again, and that I was sure I couldn’t get through. I would have blown that radiation session, and it would have been tacked on to the end of my series, and I had a terror of extending my series past 2013. Then by the third or fourth week, I was on twice daily ibuprofen for the inflammation and pain. My skin looked like hell, and I couldn’t wear a bra. Radiation sucks. The aloe and prescribed radiation gel no longer helped, as it dried out my skin more than it soothed, and the calendula cream just burned. Thankfully the nurse working with me gave me a more emollient, gentle ointment (Aquafor, I love you!), which got me through the last weekend.
Now it’s two weeks after the final session, all the grey/black ash that was the top layer of my skin has peeled away, and left a nearly normal-looking layer underneath. It looks good, though it stings like anything. I’m still taking the ibuprofen for inflammation, especially when I do too much. I guess you could say that I can finally accept that radiation is really, truly behind me, though the pain and tight skin remains. I can wear a bra now, sort of, but not all day, and if I push it past 5 hours or so, I feel like I need to take a scissors to the bra to get out of it.
When exactly does this get easier? Yes, I’m elated that I am not being radiated every day, or being infused with chemotherapy agents once a week or so. But seriously, recovery may be the hardest phase I’ve encountered yet. Quite frankly, it’s a bitch. I want to be able to do the things I could do before, like, oh, I don’t know, pick up all the laundry, get it washed, dried, folded AND put away, and NOT be completely done in the next day? As I write this, though, I realize now how far I have come since March 29th. It wasn’t so very long ago that just taking a shower would do me in for the afternoon. Recovery is HARD, maybe the hardest thing I’ve ever done. But now I can really see it – I Am Getting It Done.