Ivan loves to figure out how things work, so after my Neulasta had done its thing last time, and he peeled it off my arm (FYI: Goo Be Gone is great for getting those things off! Made it a lot less painful.) so he could figure out how the mechanism worked. He was intrigued and still not completely clear on how it works, but he sure had fun trying to figure it out!
With chemo #5, for the first time, I did NOT get the dreaded Taxotere rash, for which I'm very, very thankful! The mouth infection I get every time wasn't as severe either. Double score! Exhaustion and diarrhea, however, continued to keep me down. My oncologist agrees that having celiac disease probably doesn't help; my intestinal system was already compromised and chemo really does a number on it. Glad that in a month that will (hopefully) be all behind me. Insomnia, an ongoing issue for years, continues to be a problem. I'm not sure how much is just same old, same old, and how much is due to chemo. It doesn't help when you have to get up multiple times in the night to run to the bathroom...after a while you just can't get back to sleep, no matter how hard you try. Es lo que hay. Really hoping that chemo #6 mirrors #5, with fewer, less intense side effects!
I was a little nervous about whether the oncologist would push chemo out a week again, because up through Tuesday, the diarrhea continued (and that's why it got pushed out last time). But, Hallelujah!, I woke up yesterday and did not have to start the day with an Imodium. Thank you Jesus! So we packed up like we always do for chemo day (you'd swear we were moving in!) and off we went, fairly confident things would proceed as planned. And they did!
Last chemo!!!!
The clinic was the busiest I've ever seen so yesterday I waited 45 minutes to see the doctor, and then more than half an hour for a chair in the chemo room. No kidding, I was the last patient out the door last evening at 6:15. I get a LOT of drugs: two immunotherapy and two chemo along with three drugs that mitigate side effects; that adds up to a lot of time, since they can't be done simultaneously and the main drugs take an hour each while the mitigating drugs take 1/2 or so each, and then they have to put on the Neulasta patch. Made for a long day!
And it wasn't over yet, because I'd placed an online order at the grocery store to be picked up between 6-7, so we headed straight there since it's 1/2 hour from the clinic. On the way home we also had to stop at CVS to pick up the antibiotics for the bronchitis. I was so tired by the time we got home, I ate supper and crawled into bed!
But let's back up. Yesterday I found out that it's a tradition to get pink balloons on your last day of chemo. What a fun surprise! I knew about ringing the bell when you finish radiation, but not about the balloons after chemo. Even though I'll still be going back every three weeks for Herceptin, yesterday marked the end of official chemo. Woot!
Yes, I dress this way for chemo day! Comfortable, lightweight sweat pants rule the day!
I did manage to lose one of the balloons on the way to the car, but that left two which is just enough for the grandkids 😀 Simon and Betsy were here this morning and they had fun playing with the balloons for a while, and it was fun to see the games they thought up!
Monday I saw the surgeon. She's totally on board with my decision to go for a bilateral mastectomy, given my family history and the fact that I can't have MRIs (that would help give a clearer picture of what's going on). She was also totally on board with waiting six weeks, to give me time to fully recover from this last chemo and hopefully gain a little energy first. So that puts surgery probably some time the first week of October.
I was surprised to find out it's an outpatient surgery! But she explained hospitals are not a good place because the chances of getting an infection are higher in, than out, of a hospital. That was something I was concerned about, given my body is so physically depleted (and was before we even started on this cancer journey). There are scenarios where they'd admit me, but I'm hoping we won't run into those. She explained surgery will begin with her placing a radioactive seed under the nipple of the affected breast and they wait to see what, if anything, lights up. The PET scan last month showed a lot less cancer activity in the lymph nodes (none in the breasts) so hopefully the last two chemo treatments will help bring that activity to a complete halt.
I'm glad Ivan was with me, because he was able to clear up some confusion for me later. From what I understood, she either takes no lymph nodes (if nothing lights up) or she takes out the whole axillary cluster. But Ivan said she told us that if the radioactive seed works, it will show which (if any) nodes need to be removed. However, it may not work well, if chemo has damaged the ducts, and if that's the case, the radioactive material won't be able to travel to the lymph nodes, and then she'd have to remove the whole axillary cluster. If she has to take them all out, I'll be facing issues with lymphedema down the road. Sharon had lympedema pretty badly on the affected side, and I'd wrap her arm with Ace bandages at night (not comfortable!) but later her insurance paid for a special machine she could use daily.
The surgeon was patient in answering all my questions... Healing will take about 6 weeks, the drains should be out in 2-3 weeks, I'll have a scar all the way across my chest (not going for any type of reconstruction), and she'll determine when I can start radiation. That last is especially a relief, because I was nervous about starting radiation while still healing from surgery.
Because I'm choosing to wait six weeks for surgery, and it will likely be six weeks after that before I begin radiation, I'm letting go of the expectation that I'll be done with the worst of treatment by the end of the year. I'm just going to plan on radiation continuing into January. If I actually manage to make it through without having to pause, and do get done by the end of the year, then I'll be happily surprised! But if I don't, I won't be surprised or too sad. Ivan tells me I'm too pessimistic, but I say I'm just being realistic 😉
Actually I'm learning it's just the way I'm made. I've been reading up on the Enneagram, and taken the test which confirmed I'm totally a 6. Early in August I read "Reading People" by Anne Bogel, who delves into the various ways we determine personality. Fascinating book! I read it and then started reading it aloud to Ivan before my voice gave out from the smoke induced asthma. I've just finished reading the sections on 6s in both "The Road Back to You" and its companion "The Path Between Us" and although I'm not a 'perfect' six, I do match 95% of the description. It can be rather disconcerting because most of what's written is about the negative aspects of each number. But in "The Road Back to You", the author explains that's because it's easier for people to see the negatives in themselves than the positives, so it's a lot easier to determine your number. They do talk about the positive aspects, which helps, but I'm thankful for them shining the spotlight on the negatives and giving concrete suggestions on how to change those parts of yourself that make you cringe. (And believe me, I cringed a lot while reading about 6s!)
I've had a hard time reading this summer because chemo brain (yes, it's a real thing!) has made it hard to focus or concentrate. I only managed to read two books each in May, June and July. But this month I'm picking up the pace -- albiet a slower pace -- that's allowing me to get back to reading more often. I've actually read 9 books this month! Well, 7 whole books and parts of the two I mentioned. I do want to go back and read about the other Enneagram numbers, but all in due time.
I binged read the trilogy by Marisa de los Santos featuring the same characters: "Love Walked In", followed by "Belong to Me" and then ""I'll Be Your Blue Sky". I have to admit I started with the last first, because I didn't know it was the last of three! I enjoyed it so much, I didn't mind going back to read the beginning. And they really are stand alone books, but so much more delicious together! They're not typical romance novels at all; each is imbued with a mystery that slowly unfolds, as do the characters. I also enjoyed the newest book by Linda Castillo whose protagonist is the chief of police in a small town with a heavy Amish and Mennonite presence, who herself grew up Amish. Her books can be rather dark, but aren't heavy on the blood and gore, so I can handle them. What I like is how the main characters have developed throughout the series, and that I rarely figure out "who done it" ahead of time. Is there anything more frustrating than figuring out the end at the beginning of a book?! I think not! I also read a couple of books that I put in the "well, I'll never get those hours back again" category. Not absolutely horrible -- I give books 2-3 chapters and then I'm outta there if they don't keep my interest -- but also not worth mentioning by name.
Summer here is starting to wind down. We've gone from an average of 108 down to the low 100s, and everyone tells us in a month it will start to get bearable again. I'm all for that! I'm hopeful that as the weather cools down, I'll start feeling better and be up to exploring the area. Ivan's done a bit on his own and with Tina and family, but I've pretty much been a hermit since we moved here. Anyone been to Vegas or Nevada and have suggestions of places we should visit?
