July 2020 chemo club

Melbo—have you looked into short-term disability leave? Since you’re doing TCHP, you’re still going to be in treatment even after chemo ends, so you might be able to take that kind of leave, get paid, and not have to exhaust your accrued vacation time (though they’ll probably expect you to use some, and maybe allof it, depending on their policies).

IamLoved—I don’t know if it actually helped or if my body just caught up, but I started taking iron (just one gummy, no megadoses or anything, though my iron wasn’t actually low—did they test yours?) and eating a ton of spinach and doing a lot less physical activity when my numbers started drifting down, and they were slightly higher at the next draw. I also felt much better. If I had to guess, I think being easier on my body did help. From what I’ve read, there’s no quick fix other than a transfusion.

Melbo- I met with the breast surgeon and plastic surgeon after my 4th chemo. We discussed my options and figured out what we are going to do for surgery, but they haven't officially scheduled it yet because AAMC is not scheduling very far out because of COVID. (I could tell this frustrates the surgeons a bit.) So that may be why you haven't heard from the surgeons yet. I would give them a call on Monday.

As for me, I haven't reported in a bit. I'm done with infusion 5 and am struggling a bit emotionally. This has just gone on for soooo long and each round it takes me longer to "bounce back". I keep trying to tell myself only 1 infusion left, but that isn't really helping because I still feel awful from the last infusion and know that I will feel awful for a couple of weeks after the last infusion. Nothing to do but just endure I suppose. Hope everyone else is hanging in there too.

Jenny, I get how you feel. Toward the end, it got harder and harder emotionally. I had expected it to be easier with more experience to rely on, and with seeing the light at the end of the chemo tunnel to motivate me. That wasn't the case. Getting up out of bed to go to the last infusion was exceptionally hard, and telling myself yaay it's almost over didn't help at all. Knowing that the SE would be temporary didn't help either. Maybe because I knew that after chemo comes rads, or maybe it was the fear of the future. Or maybe just because I was so exhausted physically and emotionally from the surgeries and long months of treatments and worries.

What I will say to encourage you is that you can do it. You can get up and face it and keep moving forward. Focus on the moment that you are in, except for when in the middle of dealing with side effects after. Then it helps me to focus on the day I know they typically lessen. I tell myself ok I feel awful but I know that if history repeats itself in two days m, three days, whatever Iwill feel better. Also, DURING my last infusion I got through it by focusing on what I wanted to do when I left the clinic. Sounds silly but during the entire infusion I dreamed about Arby's beef and cheddar which I haven't eaten in years but which oddly sounded good. “When I leave I'll go get Arby's." I imagined myself eating it. How it would taste. How it would feel when I bit into it. And I did go get one after. Eating it felt like a victory.

You can do this. You can. Just do the next thing, one after the other until you get to the end.

Well. I am almost done. I’m entering my “good week” and as usual, it is packed full of appointments and things I want to get done before my chemo in a week. I am really emotional. I sat down and started thinking about it all, and tears just stream down my face. I’m so glad to be done with these 6 treatments, it seems like this was going to be the hardest step...but now that it is almost over, it seems like it is just the beginning.

I meet with my Dr on Tuesday, to discuss what is next. I would like him to tell me I’ve done such a good job at kicking cancers ass, I won’t need my last infusion...but I would imagine that will happen when pigs fly. I’ll be making my appointment to meet with my surgeon again, on Monday. They said I can meet with him the beginning of November to figure out the surgery... I’m scared. I have made the decision a while ago to do the BMX, but now that it is coming to a reality...I’m scared. Everyone is always relieved when I tell them that is the plan, and “just imagine you’ll have brand new perfect boobs” when you’re all done. I’m so sick of hearing that. Do they even know what I’m going to have to go through to get them?! Because of radiation, I’m thinking I will have to go through the expander, reconstruction in a year jazz. I’m not excited about it. I don’t want to be in pain, I don’t want to stay in a damn hospital. The only shining light is hopefully I can get some lipo from my stomach and be skinny too when it’s all done. But that’s not for sure either.

I’m only 4 months into this journey, and I am ready to get off this ride. I want to eat a cheeseburger and have it taste like a cheeseburger, and not give me the full body shivers because it’s nauseating. I miss sushi. I miss white claws. I miss my sleep. I’m tired of being scared of covid.

December is my favorite month. It’s my birthday. It’s Christmas. It’s winter. It’s my favorite time of the year. Usually we go on vacation in January. This year I’ll have a major surgery, drains, recovery, pain...covid won’t allow for a vacation, even a small local staycation. I won’t get to decorate my 2 houses...wrap gifts...baking....because I’ll be recovering from stupid cancer surgery. I’m sad, and this sucks.

I know I need to be grateful for what health I do have, that I am fighting this, and it will all be ok. But this is turning into the longest, hardest, dumbest year of my life. I’m supposed to be trying for a baby. I should have been seeing the ultrasound tech for that...not an echo to make sure my heart is still ok. I’m tired, and frustrated and feeling sorry for myself.

Thank you ladies for listening. I have a blog, which I do share a lot on...but this is something that I just feel like everyone else doesn’t need to know. ❤️

Hello everyone. Sounds like a few folks are almost finished with infusions. I don't even know what to say to that. Yay! would seem appropriate, but it also sounds like instead of being the relief we thought it would be, it's just the beginning of more anxiety. That's how it seems for me at the moment. I've actually lost track of what treatment I'm on. Can you believe that? I wouldn't if I weren't sitting here seriously trying to remember if it's Taxol 4 or 5...or maybe even 6? Chemo has done a number on my body, but I fear it's nothing compared to what it's done to my brain. If I go into another room to get something...forget it. If I get interrupted mid-sentence, well, you'll never hear the end of it. I'm supposed to be guiding my kids through NTI, and sometimes I can't remember the simplest things. I know a lot of people experience this, and I'm hoping it's only temporary. I need to be doing the surgeon and plastics meetings as well, but I just can't bring myself to set it up. I can't decide between the lumpectomy or mastectomy. I don't want to think about radiation. And, I'm still in denial that I'll be on some stupid estrogen blocker for 10 years or more. I'm in menopause right now (thanks chemo...or maybe not).

I digress. Anyway, thanks for reading my whiney, mopey Monday morning post. Taxol number something is on Wednesday. Good luck to everyone - and I hope you have a great week.

I have a rash under my left breast (cancer boob) and I know it’s almost certainly just a skin irritation, but man it’s easy to get freaked out. I suppose I will be calling the nurse line in a couple of hours.

KMom, that's stressful and upsetting! Hopefully, it's the CT scan that is done for mapping before radiation to help them locate the treatment area and avoid as much healthy tissue as possible. If someone starts marking on you during the CT scan, it doesn't mean they found something new. They're identifying where to direct the radiation and do the tattoos.

Melbo, I hope you got some answers about your rash.

Iamloved, awesome pictures of you and your friends. Such a great idea to have themed hats at your infusions.

BlusteryDay, all the best to you as you have your last infusion on Friday and start radiation treatments in November.

Susie, I hope all went well for you at your infusion today.

AnnaTheBrave, we have our 5th infusion on Thursday. I hope all goes well for you (and me!)

Regarding the emotional distress and anxiety everyone is experiencing: Yes, it's difficult, exhausting, scary, frustrating, frightening and sad.

Thank you to all of you for being a kind, supportive group.

KMom57, I am saying a prayer for you right now... you're in my thoughts!

Well, I unfortunately have caught a cold. My husband came down with it and he quarantined to try and keep me from getting it, but apparently too late. I have no fever, had a sore throat for 2 days, and now a runny nose. Otherwise I feel fine. I go in for blood work tomorrow and am supposed to have my last chemo on Tuesday. I really hope this does not set it back. I know everyone that had this cold bug recovered in 2-3 days...I’m wondering if it’s going to take me longer because of my blood counts being lower. I don’t know how it works..

Ugh! I guess expecting the unexpected is the only way to get through this. Being mindful, being in the moment, all that stuff we know is true but also feels like patronizing bullshit! 🙄 I’m so sorry for those dealing with new reasons to feel afraid!! I have an MRA (like an MRI but it looks at blood vessels) of my brain today to look for what could be causing this weird pulsating tinnitus I have (and that other people can hear!). Something related to my blood flow, and hopefully just related to blood pressure changes caused by chemo. Still, never fun when a doctor tells you he wants to rule out an aneurism!

Shar, I hope you’re feeling good today! I feel very excited/relieved/disbelieving that I only have one TCHP left!

I had been feeling pretty stable emotionally lately but then starting crying unexpectedly when I met with my PA yesterday. Just so angry with myself for not going to the doctor earlier, when maybe I wouldn’t have had a positive node. (I’m really fixated on this damn node and wondering if surgery will show there are more. But I literally couldn’t go to the doctor earlier bc everything was closed and I was home alone with both kids and teaching onlinefull time, but that logic doesn’t do anything to take away my anger.) Her advice was that the only reason to look back is to see how far you’ve come. Yeah, yeah. Again, I know it’s true, but ugh. I don’t feel like I’ve come that far! This all just sucks and I don’t wanna deal with it! Booooooooo!!!

Got my blood work done today, and they said as long as I get better (from my cold) before Tuesday, I can get my infusion. They just called back and I have to go back in today for a potassium infusion. Dang it.