I am done with chemo #3. I got extra steroids and Benadryl this time and did not have an allergic reaction! But I did sleep through the entire infusion.
Getting ready for chemo infusion. Trying a different mix of pre-chemo drugs this time to try to avoid the allergic reaction that I got both previous times.
Currently heating my arm to facilitate putting the IV in since I opted not to get a port.
Also, we’ve been snagging gloves and other “horse supplies” from exam rooms. Here’s Suzanne checking out the selection.
Meanwhile, I also have a plan to follow up on my benign 3.5 cm adrenal mass. It’s been reviewed by a breast oncologist here at duke who also specializes in adrenal cancer (!) and she wants to do a full work up about 6 months after I finish chemo so we have a baseline for monitoring. She feels like it is probably harmless but agrees with me about doing a thorough baseline.
A different phlebotomist today, so this will be my first chemo with no unwanted kisses.
Suzanne doesn’t want her picture taken (maybe later) but said people might be surprised by her book that she brought with. She said it’s ok to photograph the book.
Off to meet with my doctor. Chemo around lunchtime or later.
I’m on steroids today! I [feel like I] can do anything! Chemo tomorrow, and the amazing Suzanne is generously taking me to Duke. I’m super pumped to spend the day with her!
I wish I had planned this better and taken a photo from the same angle and same place every few days. But at least I have some photos of the hair loss process. I thought about doing a closer shave, but I really don’t want to prematurely damage the hair follicles. I don’t have any research on this or anything, just a “how I feel about it” gut feeling that I want all the hair to fall out on its own. So apparently the back of my head just really is hanging in there til the bitter end. Also, no apparent speed difference in the brown hairs vs. the gray hairs falling out. I actually suspect one of the gray hairs has been the only one that has kept growing (of course).
<First Chemo: October 10>
<Second Chemo: November 7>
You know, this is a “I know people like pictures” post. After all, the hair loss is the most visible effect of the chemo. I do think the hair loss is fascinating. Let’s face it, the chemo damages all of the cells in your body, not just the cancer cells. (Still need to invite my friend’s scientist husband to do a guest post on this topic.) But honestly, just the grueling length of the treatments for this disease are taking a toll, too. I’ve been experiencing a lot of sympathy and compassion for those who have to do a lot more chemo treatments (compared to just my 4). And many women have to follow up the extended chemo treatments with 6 weeks of radiation, where you go in for treatments 5 days a week. Granted, I will have to take hormone repression therapy for 5 years after this. So it’s not like I have this next chemo and the one on Dec. 19, and then poof I’m done. But wow, I have lived cancer (or waiting to hear if I have cancer) since the beginning of July, and this stuff really wears you down. I mean, if I didn’t have goals like going to work everyday or getting out to ride my horse, I think I would just be in some kind of twilight zone. I just hope I’ve done enough (and that the lucky stars align) that this crap doesn’t come back (technical term, “recur”) because I just can’t imagine the work it takes to adjust your mindset to a chronic and — gasp — terminal illness. Because what I’m doing is quite the mind=f#$k itself.
So tomorrow I will happily go with Suzanne and get my poison pumped into me. I’ll probably have an allergic reaction to the Taxotere again and have trouble breathing briefly, but I won’t freak out because they give me Ativan ahead of time. I’m ready to do Round 3. I want to get on with it. Because this sucks so bad that I just want to DO SOMETHING ABOUT IT. And the best I can do right now is keep showing up at the Duke Cancer Center. I’m ready. Let’s go do this.
P.S. I will be live-blogging tomorrow (Tuesday) again during chemo. Sometimes I don’t post everything to Facebook, so you can subscribe for email alerts by going to the home page of this blog and entering your address in the righthand column. You do have to reply to an email for the subscription to activate.
The liver cleans the chemo out. Is there any chemo left in me? I don’t really know. I have a weird rash/sores on my wrist that don’t seem to be healing. I had wicked, evil mouth sores yesterday. I got my period out of nowhere and it is also wicked. Even though I have all my energy, I took the past 3 days off from riding, thinking it might be good to take a mini rest. Instead, I feel lethargic. I have only taken about 3,000 steps each day the past 3 days, compared to about 10,000 per day if I go to the barn and ride.
Also, I think I have some kind of long-term stress-induced constant hunger. Usually I actually go off my appetite in times of stress, but my husband told me that people have hunger/food related responses that may differ in the short-term vs the long-term. I guess I’m a long-term stress-eat-for-comfort person. I’m up a couple pounds in the past few weeks! I have been worrying a lot about whether the abscess will come back or whether there will be a new reason to have to go to the hospital. Tomorrow marks the equivalent day that my first abscess symptoms struck after Chemo #1, and I am just basically the definition of paranoia right now. I messaged my oncologist with all of my states of affairs and he said everything sounds like normal chemo side effects and in my sane version of myself, I agree.
So my husband is heading home with some peanut butter chocolate Haagen Daz and I have a premade batch of chicken and rice casserole (from the last time I had mouth sores). And starting tomorrow I’m going to ride and ride and ride to try to burn off these calories.
And I’m drinking a cup of this in hopes of helping my body get the bad out. I usually try to tune out all the “fight cancer” diet stuff because there are just too many things one can eat or drink to “fight cancer” that it makes me feel overwhelmed. But tonight, I’m drinking detox tea. Because mouth sores suck, and this rash is creepy.
I have been doing relatively well since Chemo #2. I had fatigue. I actually retained most of my taste buds. Most of my hair is gone now but I’m not smooth-headed. I have been riding. And jumping. Even though I kept thinking my horse would get a nice restful time of very little riding as I endured chemo, instead it is as though all I do is think, “Am I well enough to ride today?” And maybe even if the answer should be, “This would be a great day to take it easy and rest,” I instead find myself saying, “I know if I just drag myself out there and ride, I will feel more energized afterward!”
So I ride. I dream about moving up a division. I look and see if anyone has posted 2015 show calendars (most haven’t). I try to understand the different rules and types of competitions for different show organizations. Because, as if I don’t do enough horse stuff already, it turns out that after you finish active cancer treatment, it’s important for you to jump (ha!) into new goals and stay very busy, because many people are negatively impacted by not constantly battling their illness. That transition is a perilous place for many. So I, of course, think I will need to be riding and competing more than ever!
Also, in the news today: The Mini got its stripes fixed (two stripes very close together, down the middle of the hood). And as a gift to make up for their mistake, they gave me my long desired Mini butt stripes. Feast your eyes. It is the cutest Mini butt ever.
Special thanks to Flow Luxury Collision and Body Shop. Nice folks who know how to right a wrong.
OK, so I had my second round of chemotherapy (taxotere and cytoxan aka TC) on Friday, Nov. 7. Here’s what’s been going on since then …
I have made some small changes in my approach to this round of chemo and they may have made a difference. First, I am taking regular Claritin 24-hour (last time I took Claritin-D 12-hour), to try to combat the “bone pain” from my Neulasta shot — that’s the shot I give myself to stimulate white blood cell production in my bone marrow. Anyway, the studies of Claritin to combat Neulasta bone pain are not complete yet, but it has anecdotally been known to limit the pain. After my first round of chemo, I would say that the bone pain was, quite simply, excruciating on multiple levels. First, it affected the top half of my body. A couple days later, it affected the lower half of my body. It was layered pain — there was superficial extreme tenderness, a deep throb/ache, and an electric/sharp pulse. All. At. Once. Even my face hurt. This is not unusual — Neulasta is known for this horrific pain and yet it is considered a small price to pay for pumping up your immune system should you face a life-threatening infection.
Last time after my Neulasta shot, I couldn’t sleep well for two nights.
This time, I took the 24-hour regular Claritin at 8 am each morning, and — with doctor’s permission — I was prepared to use the leftover Percocet (from my abscess … you’ll recall they gave me 90 pills) and also to use ativan to help me sleep. I do think this approach has dialed the pain back maybe 5-10% and also just helped me cope better with it (yay, pain pills).
Saturday evening: Gave myself my Neulasta shot.
Sunday evening: Expected pain to be full-blown like last time, but it wasn’t! Just a sore neck and shoulders. Took one Percocet before bed, slept through the night. Maybe the Claritin held pain at bay for an extra day compared to last time.
Monday: Bone pain had set in. Made it through the work day. Rested all night. Took Percocet and ativan at 10:30 p.m. and again at 2:30 a.m. when I woke up in pain. Mental fog all day.
Tuesday: Was just wiped out from fatigue and contstant low level pain by lunch time. Severe mental fog. Went home early, took afternoon nap and woke up feeling very good. Went to the barn and rode very lightly in hopes that exercise would energize me. Went home, took one Percocet and was able to sleep without ativan, although did wake up with pain twice during the night. Got back to sleep without Percocet (was too late to take one and go to work on time).
Wednesday: Pain seems to be shifting to lower body. Woke up energized but losing energy quickly. Going to try to make it through the whole day, but a nap is sounding sweeter and sweeter. Mental fog. Even writing this blog post is kind of tiring.
Honestly, if I have to take pain pills or ativan for 2-5 days after each chemo treatment, I think that is OK. I think I made a really big mistake of trying to “tough it out” after my first chemo — working 8 hour days, keeping my usual riding schedule, going to the grocery store myself (like, every day) and securing most of my own meals since my tastebuds were going bonkers, doing my laundry, and trying to avoid taking any narcotics…. This was a dumb and insensitive approach. Why not be kinder to myself? Just being awake for 12 hours was a chore. Interestingly, now that I look back at my chronicle of chemo #1 side effects, I did have severe fatigue over these same days last time, too! I’m a little nervous about the upcoming Thursday-Friday, because last time that is when my GI tract issues gave the first hint of distress and also that’s when I got thrush. My tastebuds have survived better this round, I think because I’m doing the thrush-busting saltwater rinse as directed.
I kind of wonder whether, after Chemo #1, I put undue extra stress on my body by my diehard commitment to keeping a full-time work schedule and not using pain pills …. that may or may not have contributed to the development of that horrible, hospital-admitting abscess, but I am going to be kinder to my body through these last chemo treatments. It’s OK to take a half day or even a whole day off if I’m just plain tired. Sure, I’m out of paid time-off for the year, but fortunately my family can handle my missing a few paid days of work. I find it’s more of a psychological thing — if I had the paid sick days off, I would take them and righteously so. But without having “paid time off,” it’s like I don’t feel entitled to take the time. And months ago, when we first learned about my needing chemo, there was constant talk of how young people work through chemo and it often doesn’t affect them so strongly. In my silly head, I took that as a challenge that I would indeed work full-time through chemo.
And one really bright spot has been that my taste buds are pretty normal so far. I have been craving creamy, savory foods. Oh, and unsweetened mint iced tea, which my husband has kindly been making for me.
We are wrapping up here. All went smooth but I am tired from a heavy dose of Benadryl!
Last time I had chemo, I had an allergic reaction to the one called Taxotere. We upped the steroids this time, but I did have a reaction again — tight chest, flushed face. Next step is trouble breathing, but I summoned the nurse before that could happen.
We are now waiting for Benadryl to kick in and they are calling my oncologist to discuss. Hoping we can work through this taxotere allergy like we disks at time!
Ready to get my steroids, ativan and anti-nausea pre-chemo cocktail. They got the IV in on the first stick today, hallelujah.
We are just slightly behind schedule here. All in all, it’s a much calmer scenario than chemo #1. That said, my pre-chemo consult with my NP was essential, as I had to remind her that I needed extra steroids for the Taxotere allergy (one of my chemos). We also ironed out my last two chemo dates: they will be Nov 25 and Dec 19. We also have a plan to monitor any possible flare up in my abscess site (will try to come through non-ER channels here at Duke). They are also working to develop a follow-up and monitoring plan for the benign adrenal adenoma. I love my Duke team and feel like I am in such good hands. It is just a night and day difference in the experience here than at Wake Forest Baptist.
My chemo buddy Monica and I in the infusion room.
We packed a lot. Monica even brought a 500 piece puzzle. Ambitious for a teammate on ativan.
The nurse just told us the Duke Cancer Center gives chemo to 100-150 people per day. Amazing.