One week after chemo

Had my weekly appointment with the oncologist. Usually I just say “gained (or lost) weight, had a Neulasta shot, doing fine.” But this week was a little different.

My white blood cell counts are at an all-time low (or, as the oncologist says “they are in a coma.”), which could jeopardize the planned Round #4 in the first week of August. Instead of the usual Neulasta shot, I am having a three-day series of a shot whose name I cannot remember for the life of me (stupid chemo brain!), but it is supposed to be faster-acting than Neulasta. Neulasta takes 9 days to see the effects on the white blood cell counts; the three-day series should see effects by the end of the series of shots (I think). I’m also on a new mega anti-biotic to make sure germs don’t take advantage of my comatose white blood cells.

Good news is that the shot is a subcutaneous shot, not one that will need to go through the port (which–as much of a Godsend as it is–is still a little ouchy when they access it) or intramuscularly. Sub-q? Pshaw, I can do those standing on my head (the heparin shots I did during the pregnancy with the boys were sub-q).

Oncologist talked about my weight again. I’m down three pounds from last week (told you it was a brutal weekend), and 11 pounds overall from my first oncologist visit post-diagnosis. He personally wasn’t concerned about the weight loss, but wanted to make sure I understood why. If you remember, last week he mentioned a new study out that found that breast cancer patients who didn’t gain weight post-treatment had lower rates of recurrence of their cancer than patients who gained weight. So he was underscoring the connection between this, and making sure I understand that it would probably be best if I don’t gain back much of the lost weight after treatment.

I also had another meeting with the breast cancer support group. Mom, they have been asking me to bring a copy of your poem you wrote to your oncologist/plastic surgeon with me for two meetings now and I keep forgetting, but I PROMISE you, I’ll remember it next time! Several of the members of the group have written funny cancer poems and I am eager to share yours (I assumed it would be okay). One woman in the group has read a funny poem at every single group, and today’s poem was about our leader showing the group her reconstructed breast and nipple…just as the UPS man walked in the room! (this happened at my very first meeting — we all fell over laughing at his face)

Among the more serious things we discussed was my recent thoughts (revival of thoughts I’ve had for a few years now) that maybe my post-cancer plans should include going to nursing school. I’ve really loved all the nurses who’ve helped me along the way (especially those in the hospital after my surgeries, and OBVIOUSLY the oncology nurses) and have been pondering the question of “is it for me?” Not just that question, but the further question of “is it just because I’m a cancer patient right now?” Consenus of opinion among the group members was that it was NOT an idea that I should be suspicious of, but that it in fact might just be how cancer changes my life. As the group leader said, “it’s unusual that having cancer will not cause major changes in one’s life.” Further, they pointed out (as my oncologist had, as I mentioned it to him as well) that my being a cancer patient would give me something that not everyone in the medical profession can offer to their own patients: empathy for the situation. My oncologist in particular said that would be a significant plus for my potential new career as a nurse, in his opinion.

Oh my Gosh, and then one of the women in the group (whom I’ve only seen at treatment twice before today) rushed in all worried about me, asking how I’d done with my third round. I told her the truth, that it was pretty bad, and she replied that she’d dreamt about me over the weekend–dreamt that I was sleeping when I shouldn’t be–and the dream upset her so much that she woke up calling “Sarah! Sarah!” and worried about me the whole rest of the weekend until she knew she’d see me at group today. Isn’t that interesting? I kinda hope she doesn’t dream about me again if that means I’ll have a bad response to a round of chemo!

So you see it was rather a busy day. It’s been a series of busy days around here, with no end in sight.

Round #3: Four Days After

One thing I’ll say for chemo: it’s lovely how predictable it is! Just like with the other rounds, I woke up feeling fairly awful and yet had rebounded and was feeling almost entirely better by the late afternoon. I’m even feeling hungry again.

Round #3: Four Days After

I think I truly understand the meaning of the word “dreadful,” as that is how I’ve felt for days on end now. Think of your worst-ever hangover and then imagine that carrying on for four days straight. Ooof.

All of which is made worse because Tom will not let me tell him what happened in the latest Harry Potter (which I finished shortly after midnight). The boys are also singularly uninterested in the plot developments.

Round #3: Three Days After

Oh it was a really awful-feeling day, but Tom did go out at 2 a.m. to get me the new Harry Potter and the boys had three-hour morning naps, so things could be worse.

Got to get back to Half-Blood Prince now.

Round #3: Two Days After

Typical Day 2 post chemo over here: feeling awful and ridiculously exhausted. Bright spots? The boys’ laughter, the new Harry Potter coming out at midnight tonight, and the knowledge that come Monday I should be feeling better again.

Round #3: The Day After

Not feeling bad, just exhausted. Feeling so worn out! We did manage to get over to the oncologist’s to get my Procrit shot while the boys charmed the patients having treatment, but other than that, it was a quiet day.

Forgot to mention that I finally got smart and at yesterday’s appointment I asked the oncologist for a prescription for the special mouthwash that is supposed to work wonders with chemo-caused mouth sores. I don’t have mouth sores at the moment, but they always show up in between appointments and I never feel like it’s major enough to call the office. Anyhow, now I’ve got the prescription and will fill it the moment one of those horrible mouth sores makes an appearance.

Chemo Round #3

Round #3 went well, in fact, it was pretty speedy. There were only one or two other people having treatments today — everyone else was just having in-between bloodwork done. So I was having my premeds by 10 a.m. (usually they’re not started until much later in the morning) and was home at two o’clock. True to form, the Benadryl etc. put me to sleep for most of the treatment, but Tom woke me up to eat a BBQ pulled pork sandwich he brought for lunch, so I didn’t sleep the entire time.

During the meeting with the oncologist, we were talking about my weight loss (overall, about six pounds since the surgeries and starting chemo) and he mentioned a new study of breast cancer patients who lost weight that showed a lower rate of recurrence of their cancer than in other breast cancer patients who’d gained weight after treatment. Interesting.

Also, he said he would be happy to write any necessary letters to my insurance company to get the echocardiogram claim straightened out. As one of the countless insurance reps had mentioned something about a letter from a doctor being a possible way to sort it out, this is a good thing!

At any rate, that was how Round #3 went and now I’m home and resting and drinking fluids…and reveling in it being HALFWAY DONE!

Three down, three to go.

p.s.  Happy first birthday to our boys!

Stupid Health Insurance Tricks

The first health insurance hiccup turned up today. We got a $360 bill from an Oxford cardiologist for the pre-chemo echocardiogram that was done in late April. Apparently, our health insurance rejected the claim, on the basis that the test was “routine,” which is not covered.

Eight phone calls later (four to the cardiologist’s billing office and four to the health insurance company) and I am no closer to getting it sorted out. The billing office says they coded the claim as “pre-chemo testing,” and health insurance says it was coded as routine. No one is budging or being helpful, and I am frustrated to the point of tears. It’ll get sorted out in the end, I know, but in the meantime it’s so very maddening….not to mention about the last thing I need to worry about on the eve of Round #3.

Coming up on Round #3

Had a wobbly day, the highlights of which were taking a Phenegran (anti-nausea med) and sleeping half the day away, and finally finishing (again) the fifth Harry Potter. So now I am READY for the new Harry Potter to be released on Saturday!

Walking you through Chemo

Wow, did yesterday’s shrimp boil/first birthday party wear us all out! Tom and I both have been exhausted all day long, but it’s the kind of tired that a good nap will take care of, so nothing to worry about (by the way, a few photos from yesterday can be seen here).

My sister made me realize today that I haven’t really explained what all goes on At Chemo. Since I’m unlikely to come home from treatment on Wednesday ready to sit down and type up a big description, I figure I’ll do one now.

My appointments are generally at 9 a.m. or somewhere around then. They call me back to the treatment room — a room full of big La-Z-Boy recliners — and access my port to draw some blood for bloodwork. They leave the port line in (I’ve learned to wear something open-necked that can be pulled aside, like a polo shirt or a button-down and not a crew-neck t-shirt) while the bloodwork is processed onsite. After about 20 minutes, I go back to meet with the oncologist, or sometimes the nurse practitioner, who reviews my bloodwork results, talks with me about how I’ve been feeling, what symptoms I’ve been having, etc., and then orders the treatment.

Back I go to the La-Z-Boy room, which is often slam-packed with patients, and after a while, one of the nurses reconnects my port line to an IV and starts some IV fluids. Shortly before my chemo arrives (I think it’s prepared at an offsite pharmacy, though just across the street), they add my pre-meds: Benadryl, Zantac, and Ativan, plus something else, I believe. It’s quite a cocktail, let me tell you, because this is the point where things typically get hazy for me on Treatment Day (this is on purpose). I’ve fallen asleep for one treatment and just sort of spaced out for the other one; I think it’s the Ativan/Benadryl combo that does that.

Once my pre-meds are finished, they connect the first of my chemo IV bags. As I described in my June 1 post, there are three medications in my chemo cocktail: taxotere, cytoxan, and epirubicin. Taxotere and cytoxan are in the IV bags, and must drip individiually, each of which takes about an hour. Then when those are done, they get the syringe (a BIG one) of epirubicin, which is injected slowly–over a 20-minute time period–into my port line. Epirubicin is also called “the red devil” and it makes you pee red for a day or so–not blood red, just pale cherry Kool-Aid red.

All of this takes most of the day. It’s really sort of hazy, thanks to the pre-meds, but it’s not upsetting and it’s not painful and I don’t mind it, really. I like visiting with the nurses and the other patients and listening to my iPod and reading and napping. And I especially like it when Tom brings me McAlister’s for lunch. Hint Hint, honey.

Around 2:30 or 3, they pronounce me All Done, and Tom comes to get me and bring me home, where I watch the boys play for a bit and then the nanny makes me go lie down and rest or eat or something. Because while Day Of treatment isn’t too bad, you’ve really got to watch out for Days #2 through #5. Ugh.