Dear Diary #23 - New Amsterdam

 Hey friends,

Thanks for coming back, haha, I feel like my posts are getting boring but I have a few things rolling around in my head so here I am again! Aren't you lucky!?!? :)

I am sooooo close to being done chemo. I have this rolling marquis in my head that says only one more, only one more, only one more. Round 3 was a struggle, not going to lie about that. By Sunday I was pretty confidently saying "I'm good, I don't want to do round 4 anymore, 3 is enough". But alas, here we are, awaiting round 4, and saying only one more. Final infusion is Wednesday Mar 23. 

I thought I'd post a few updates on things that happen during treatment, as I am pretty immersed in it all at the moment. But first, I want to way a big WTF to Hollywood. WTF, Hollywood??? Hahaha. I started watching New Amsterdam on the weekend (when I really didn't want to get out of bed for much). I am really NOT a big tv watcher. We have terrible internet, no cable, and there are just so many things I could be doing besides staring blank faced at another screen. But I have been watching some lately since I rarely leave the house anyway. New Amsterdam has been out for a few years, and is just now a current hit on Netflix. If you haven't watched it.....it is a decent enough show about a public hospital in New York. It just so happens that the main character, Max the Medical Director of the hospital, has cancer. I am only part way through season 1, but Max is currently going through some cancer treatment. And it is freaking terrible!! Hahaha, omg, seriously, it is NOTHING like real cancer treatment. And it made me sit back and realize that Hollywood has scared the shit out of people that get diagnosed with treatment forever. Why? Why do they have to make it seem like you are going to be hanging over a toilet, be mostly incapacitated, and be next to your death bed to go through chemo? This isn't how Max is being portrayed, yet, but it is like that in so many movies, tv shows, etc. Why? You'd think we could be more realistic by this time, wouldn't you?? Okay, rant over. 

The reality of cancer treatment is to be a good manager. As simple as that. Every day is about managing your body. Whether that is ensuring that you drink enough to stay hydrated, are making sure that your bowels are working normally and dealing with that if they aren't, taking meds, or simply moisturizing,  it is a constant awareness of every little thing. Probably too much awareness, as it does get draining easily. But it is always important. 

I joke that it takes me longer to get ready in the morning without hair than it did before cancer, and sadly it is true. 

I've gone over the list of possible side effects before I started treatment. Maybe now it is time to talk about the specifics for my case, so in case anyone ever needs to read back over this if they go through it themselves. First, everyone is different and everyone reacts differently. But here is what is turning into be my 'normal' for a round of chemo:

- Day before chemo, start on Dexamethasone (steroid), two doses morning and afternoon. This gets me 'wired', not really high, but wired, and I typically don't sleep much the night before chemo due to this drug

-Chemo day - still on Dexamethasone, add in another 2 dose med Ondansetron (anti nausea) just for this day only. Infusion takes pretty close to 3 hours, and I get to hang out with Jayden during this. This day is long just for the 2+ hours trip to the hospital and sitting for 3 hours doing nothing, but it is a pretty easy day, and still wired on Dex so overall uneventful.

-Day 2 - day after chemo - final 2 doses of Dex so still wired. This is a day to get things done before I crash. 24 to 48 hrs after chemo I need to take that tummy injection (Lapelga) that I have discussed before. I have taken that on both day 2 and/or day3 depending on timing. BUT my body knows this needle, and my body does not like this needle. And it gets harder to convince myself as each round goes by to take this needle. I've learned that about 8hrs after injection the nausea will hit. But I have also learned that I REALLY don't like my nausea meds. I had no nausea after round 1. It started after round 2, and I took the nausea meds for a full day. I slept most of that day. I only took one dose after round 3, and although it helped the nausea it really kicked my ass. I am currently unsure what I will do in round 4, I'll talk to my oncologist about a better plan.

Day 3 - Nausea and meds mentioned above and the fatigue sets in without the Dex. This proves to be the start of the rough. 

Day 4 - usually a sleepy day, fatigue is at a peak, bone pain from the Lapelga is starting to set in. 

Day 5 - this started as a recovery day, but now the accumulative effects of chemo are setting in and the rough of round 3 lasted well into day 5. My stomach wasn't really happy with food for a few days, not exactly nauseous, just not happy. 

Days 3/4/5 are a balancing act of making sure my bowels are good, and I'll tell you there is a fine line between constipation and diarrhea, lol. But I mostly do okay with this. I'm actually very fortunate because this is a much bigger struggle for most people. It's hard to drink enough to stay hydrated when you spend more time sleeping. I love water, and ALWAYS have a water bottle at my side day and night, but sleep removes hours available to hydrate. 

One thing many cancer patients take through chemo is daily Claritin. This is a huge help with bone pain caused by the Lapelga. Sadly I am allergic to Claritin so I spend LOTS of time hot baths with epsom salts. I need a lifetime supply of epsom salts. Not joking. 

One of my biggest issues that I deal with, and I've mentioned this before, is about dehydration of my mucus membranes. By about day 4 my tongue and insides of my mouth are very dry, and this affects my taste buds. This is absolutely fucking annoying and there is no other way to say it. This lasts for about 10 to 12 days each round, but does improve before the next. Food just simply tastes bad. I said the other day that I feel like I need to try harder to make my food look pretty so it feels less shitty that it tastes bad. But every meal is just simply underwhelming for 10 to 12 days each round. But....this too shall pass. My nose is VERY dry all of the time. I apply Secaris (a nasal moisturizing ointment) 2 to 3 times every single day now. If I don't then my nose is almost bloody all of the time. I also wonder if I have lost my nose hairs (hard to know for sure haha) as my nose is getting more drippy all the time and I've read this is because of lack of nose hairs, but it might just be my nose trying to compensate for lack of moisture. This is pretty constant now and I expect will continue until after my body gets back to normal post chemo (at some point). Down below is an ongoing battle of moisture also. Chemo is very very hard on this area for me. I'm using internal moisturizer every 3 days, and for at least a week to 10 days also external cortisone cream each round. Ears are itchy, eyes are sore, and everything without normal thick skin just hurts, haha. But again.....this too shall pass. 

One big chemo side effect that I have managed to avoid is the mouth sores. So thankful! This can be crazy bad. Most people that I am talking to in treatment now are suffering with these, but they also do not have the same membrane issues I am having so, it seems there is good and bad. But I'm still thankful to not have the sores! 

I am still terrified of the potential of neuropathy that my particular chemo can bring. This is nerve damage in both hands and feet. I am making sure to ice through the whole infusion of Docetaxal on chemo day. And I try hard to look after my hands and nails between infusion. Lots of moisturizer, I rub my feet with lotion every morning  for some length of time. I use tea tree oil on my nails occasionally to try to keep my nails healthy (they can fall off during/after chemo, yikes). So far, so good, and all of my fingers and toes crossed that I can keep this at bay. Not even a tingle yet, so keep cheering on that note friends. Only one more round to keep this at bay! 

Other than the hiccup of the hives in round 1, I have managed to avoid most other side effects (so far, knock on wood). Even though I feel like each round gets just a little bit worse, and I am really not looking forward to doing this one more time, I AM thankful that this has been manageable. Which one of you wants to come and give me that tummy injection next time, though? My hands know that it is going to suck, and my hands are really hesitant to do it again. Sigh. By day 6 this past round I was still very tired, but it was mostly a normal work day. By day 7 I was feeling like myself again. Without anything unexpected coming up the next two weeks should be normal. 

I am feeling a bit weaker each round, for a bit longer each time, and that is hard mentally. I want to be strong. It gets harder to convince myself to even go for a walk because my body is tired. I want to do all of the things, but my body is tired. But again, this to shall pass. (another mantra in my head, lol). Just one more round. Just one more round. Just one more round.......

So between the scar maintenance on my incision twice a day and all the lubricating, moisturizing, foot rubbing and all the things.....the conclusion is that it takes me longer to get ready with no hair.

But let's talk about hair, haven't touched on that for a bit either I don't think (or chemo fog makes me forget, and I am completely repeating myself over and over). I've talked to a couple of people recently that asked about hair. I've learned something. There is NOTHING graceful about losing your hair from chemo. It takes a surprisingly long time, and it is not coordinated all over your body. And definitely not the same for everyone. 

As you know, if you've read previous posts, my hair started falling out on about day 11 after round 1. Jayden and Darrin buzzed my hair off on day 15, but that was after a few days of emotionally watching my hair slowly fall out. Hair loss is a very very very big deal, and even when you know it is going to happen it is harder than you can even imagine. But why does it have to be so ungraceful? Why can't it just 'disappear' and be done. So 4 days of literally pulling out my hair, then shaving it off, then upwards of another week watching the short hairs fall out. So now I am left with what Darrin calls my tweety bird fuzz. It is so strange to me that when your hair falls out it doesn't ALL fall out. I just don't get it. But at this point in my chemo treatment I have no armpit hair, I still have arm and leg hair, and I still have about 15-20% of my pubic hair. I still have eyelashes and eyebrows but those often don't fall out until after treatment is done. The last to fall out, and first to come back, some say. I rarely wear eye make up, as I feel like putting on mascara, and taking it off, will just just make them fall out faster, hahaha, it's crazy the thoughts that go through your head. I even shaved my legs at one point since my first chemo treatment. So crazy. And another strange thought is that my fingernails and toenails keep growing, albeit slowly. Shouldn't these things all just stop with all the poison running through my system?? Sometimes I am just so confused, lol. 

I don't write all of these details looking for any sympathy, as I hope you all know. It is just part of my journey, and I hope that if I can help even one person be less scared (as I spill all of the bad, hmmmm) then this blog is worth it. I wanted to know all the details. I didn't know them. But here I am. And I have found wonderful supports through my journey. In talking to women that have been through it AND in talking to women going through it. I sincerely hope NONE of you reading this ever have to go through it.....but......go get your mammograms done please :)  All of you!! You know who you are!! Go, pick up the phone, call your doctors! Please! 

Love you all, appreciate you all, and keep cheering friends! 

Peace and love

Barb