I haven’t posted in almost literally a month. Let’s talk about that. First, chemo kicked my ass from Sunday all the way through to the following Saturday. I was woefully unprepared, due at least in part to my cardiologist not thinking my requests for pain relief were important enough for her to take less than 2 days to get back to me. I am now much more prepared to go through another round of chemo, and maybe even 5 more, though I’m not going to chronicle it every single week anymore. I think updating right before I go back in is enough, unless something landmark happens during the treatment and recovery week. To that end, let’s recap the last few weeks.
First, I want to do a quick shout out to The Bloggess Tribe. They have been instrumental in making me feel not alone in this journey, even though I’m still physically hitting the hospital alone every day that I’m there but chemo days. I have already received so many cards and stickers of encouragement. One of them even made me a mug that I adore and use every day. There’s so much love there, my cup runneth over. There’s not a day that a card comes, and I am in tears from strangers sending me encouraging words. I am writing as fast as I can to get thank you notes out, and to fulfill my promise of writing to several others on that list. If you’re reading this and you’re part of that tribe – thank you from the bottom of my everything.
I went in for my first chemo treatment on March 29th, the day before my 43rd birthday. I was on day 2 of Dexamethosone and was feeling ok, no heart palpitations or excessive energy. My friend G met me at the hospital to sit with me, and I am truly blessed to have had her there for my first run at it. Thank you, G, for bringing the donuts and the crossword book! Also, thank you for being there and holding me when the cap got to be too much. Love you, sister.
They were supposed to insert a PICC line, but decided they didn’t have time, and just did it in an IV. That would later turn out to be a very painful mistake on their part. Before they started the IV, though, they got my DigniCap on and going. The DigniCap doesn’t look very dignified while you’re wearing it, but the entire point of it is to constrict the capillaries in your head so that less of the chemotherapy drugs flow through there, hopefully helping to keep more of your hair than would be there without it. The idea is, since Taxotere prevents the regrowth – so there’s a possibility of my hair never growing back – they’re trying to preserve it through the process. Because of that, before they get anything else started and any chemicals in your veins, they start the super cold water swirling around your head, dropping your brain and scalp to a cool 34 degrees Fahrenheit (3 degrees Centigrade). It hurts like you wouldn’t believe; it’s
brain freeze on meth and coke and anything else that makes you tear up when your head freezes. BUT! you might get to keep your hair, so there’s that. Oh, and wearing it adds a few hours to your chemo, because you need to wear the cap all the way through the flush so that the cocktail is diluted by the saline the next few times through.
Next, they decided to IV in the back of my hand, because that’s where the best veins were that day. What I didn’t know then was the degree to which I would come to regret not fighting harder for the PICC line. After they inserted the IV, they pushed more steroids and some antibiotics, and then they started the cocktail. Each dose is metered to precisely my height and weight that day. Because this was my first chemo, they did a push on extra HER2 receptor fighters, so my first chemo took around 7.5 hours instead of about 5. G wasn’t able to stay for all of it, so I ended up falling asleep for the last few hours after she left. By then, my head was sufficiently numb and the water felt like a scalp massage.
When I was finally disconnected, they attached the automatic Neulasta shot to my right arm. It’s a pretty cool apparatus that attaches to your body and gives you a shot of bone marrow stimulant about 27 hours after your chemo is done. It’s an excellent way to keep from having to go back for the shot, but the pain associated from the marrow growth being stimulated is pretty intense. Day 3 (Sunday) was pretty bad, and day 4 was worse. The major problem ended up being that I didn’t have Claritin because I couldn’t get the cardiologist to give me permission to take it when I needed it, so I had to suffer through the pain of all of my long bones feeling like they wanted to jump out of my skin. I’m told that’s an allergic reaction, and exactly why I’m supposed to take the Claritin. Yes, I now have the Claritin.
Anyway, Day 1 was fine – largely because I was still on the Dex. My friend J and I had rented a hotel room for our birthdays that weekend (hers is the day after mine), and we chose the property because they had a hot tub. It was my first chemo, and her first major party with her newly found little sisters, and so it
was a really big weekend for us. Only the “suite” we booked wasn’t a suite, the staff was nowhere to be found any of the times I wanted to say something about the shit quality of the room (how do you rust out a PLASTIC bathtub insert?!), and to top it all off: there was no hot tub as was advertised on the hotel’s website. So, physically I was fine Day 1 into Day 2, but emotionally I was a wreck. Also, I’m told I snored like a bear. Because I sleep on a couchbed where I am staying, it was the first good night’s sleep (albeit 5 hours) that I had gotten in months. Marriott “fixed” it by giving me enough points for a free night at a comparable property. Not dying to stay at a comparable property, especially if it was off-brand as this one. We’ll use the points and upgrade, probably.
With Days 1 & 2 in the bag, and minimal pain, no nausea (though I did have acid reflux), and an appetite, I was cool with moving into Day 3. Day 3 taught me that I had few working taste buds – sour and salty – and that my bones wanted to leap from my skin because of the marrow stimulant from the day before. It was very uncomfortable, and I couldn’t get a hold of the cardiologist for permission to take Claritin, which is supposed to calm that reaction. In fact, the cardiologist didn’t answer me for 2 days, and then when she did she told me to have the oncology team send over the drug permission. I told her I was literally asking her for the drug right then, and the following day when the pain had gone away her nurse told me it was ok to take the Claritin. It really makes me feel unimportant when they take their sweet time answering about pain management. That pain took up Days 3 & 4. My roommate M and J separately made store runs for me because I was in so much pain I couldn’t see straight.
Day 5 brought random temperature spikes, and prompted calls to the on-call oncologist. My regular oncologist determines she wanted blood work just to check my levels. I was unable to drive myself that day, but my levels ended up being fine except for the sodium. I also noticed a severe burning happening on the back of my left hand. It took me a few minutes to figure out what was going on, and it finally dawned on me: they did an IV not a PICC, and that’s the Taxotere burning & scarring my veins from the inside out. The picture is from Day 10, after I had to try to work with 1.5 hands. It’s a little better today, but that’s likely going to scar my skin as well. If they offer you a PICC or port, take it. I was supposed to get a PICC. I should have advocated for it louder than I did.
Day 6 there was blood in my urine and stool. I went back in for testing, and ended up being diagnosed with a UTI and colitis, neither of which have I ever had before. I began a serious round of antibiotics. It was painful. It’s going to happen again, I’m told, because it’s a side effect of the Perjeta. I spent the next 2 days between bed and the toilet. I also wasn’t nauseated until days 6 & 7, and it wasn’t from anything but the sugars in the Gatorade they told me to drink. Will not be consuming sports drinks for this anymore.
By Day 8, I was able to get up and out, and I went to the grocery store, filled the car with gas, and ran a few more errands. I may have even taken J lunch that day. From then on, I’ve been on the upswing. I definitely still have hemorrhoids from the colitis, but otherwise everything seems to be good.
Days 9-16 have been up and down. Hot flashes, cool bursts, but I’m basically able to get life done. I wasn’t back at work full-bore until day 13-ish. Now that I have pain management tools, that’s likely to change and begin earlier in the treatment cycle.
Day 17, my hair started coming out in little clumpies. They said 10 days, the Mayo Clinic said 2-4 weeks. I was hoping for never because of the torturous DigniCap. Now, I’m hoping it just thins a little. If not, I’m getting a henna tattoo on my bald head because how cool is that?!
Yesterday I had a cardiac ECHO test, and spoke with a new congenital cardiologist. We’re definitely more focused on my heart health than the chemo, because without my heart being as healthy as possible, the chemo is all for naught.
Today is Day 19. I’m going to grab some last-minute comfort and food items because Chemo is Friday again, and I have much testing to do the rest of the week. I’ll be at the hospital every day, tomorrow through Saturday.
If you want to support my cancer journey, there are 3 ways to do that.
1) Donate to and/or share the GoFundMe that my girlfriends generously started for me:https://www.gofundme.com/
2) Pass along my Hire Me page:https://trawlkr.com/
3) Drop a tip in my tip jar in the right sidebar ——>
Please know that it is absolutely my preference to work for my keep, but the chemotherapy keeps me from being able to go at it full-bore for at least 2 weeks each month, drastically cutting my income generating ability. SO, thank you in advance for sharing and participating in my fight.