July 2020 chemo club
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thanks for the input about talking to the surgeons, I’m definitely going to call them tomorrow just to get something set up.
Jenny — hang in there. It sucks but getting through it is the only option we have. Did you decide to stay with AAMC? I did and will see dr. Siddiq us the next time I go in before chemo. I opted for the dr that had a particular interest in breast cancer.
as for work, if they go the hard core route (still in the wait and see phase — story of all of our lives right now) then I will just use my sick leave. I’ve been accruing it for years and this is exactly the reason I made sure to leave most of it alone over the years.
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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.
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I have found that the thing that has helped me lately is finding a way to take control over some of this crap. For me, that has meant reading about anti-cancer life choices and thinking about the future in terms of the ways I can help reduce my risk of recurrence and of a second cancer diagnosis. However, I want to add that I was not in a place mentally where this kind of reading and thinking would have worked for me or been helpful even just a few weeks ago. It would’ve just pissed me off and made me consider the many ways I blame myself, so I also think talking to a psychologist helped. And I also feel like my mindset and outlook and degree of lability change weekly, which is in itself kind of exhausting. So I guess that’s all just to say I feel you and hang in there
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Good evening to all! Yes the struggle is real! The fact that we run like hamsters on the cancer wheel and often see no rest. Neoadjuvant chemo, surgery. Rads. Hormonal treatments...when will it end??. Somedays I would like to just say piss on it and just let cancer run its course. I am not even close to being done even with one chemo left. 3 weeks into November of side effects then off to the surgery Dec 1. Then rads to follow when I have barely healed from surgery. No wonder cancer spreads while we try to treat it. Our systems are so weak from treatments how can we possibly get better. Sorry to go on but tonight had me evaluating this disease. It is probably because day 5 starts tomorrow and like others have said, we know what to expect but it does not help. A prayer for peace to all who are suffering this day. We will get through but we will be scarred.🙏🤗❤
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After just posting my rant...this was from a friend on FB. Guess I needed to hear and share it with all of you.
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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. ❤️
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Good morning ladies. I'm heading to my weekly Taxol #3 this morning. I had an allergic reaction to the first but did ok once they pumped me up with extra Benadryl/steroids. They doubled my dose of those with my pre-meds last week and did just fine. So assuming (hoping) today will be the same. Knock on wood, I've felt pretty good this past week until yesterday. For some reason, I started feeling nauseous late afternoon and then vomited. Once everything was out of my system I felt much better and haven't felt sick since. I ate mussels for lunch yesterday (high in iron) and wonder if it had something to do with that. Won't be having those again.
I had an appointment this past week with physical therapy at my cancer center to do measurements and check range of motion after ALND. Despite feelings of numbness/swelling still in that armpit region, all measurements were good. I also had felt a lump in my breast last weekend that freaked me out. They went ahead and did mammogram/ultrasound and determined it was the Biozorb which had been put in during my lumpectomy that I was feeling. It will eventually absorb but mine hasn't yet. I was so relieved. I just kept thinking that maybe cancer was recurring/spreading despite going through all of this chemo. I'm guessing we'll have these fears going forward!
I agree this journey just seems so long and so much longer to go. I was diagnosed in April and had my surgeries prior to chemo. Chemo won't be done until December and then rads through Feb. Not to mention hormone treatment for ten years and my doctors want me to eventually get my ovaries removed. I was telling my husband the other day that we're coming up on six months after diagnosis but in some ways it feels like we've been dealing with this for much longer. Covid restrictions certainly don't help in that regard. I was at my son's cross country meet on Saturday and ran into a couple of other moms who had no idea I even had cancer. I'm so sick of staying in! But the cases keep increasing at my son's high school so I realize it's the safest thing for me to do. I keep telling myself it's all temporary.
I hope everyone has a good week with minimal/no side effects, both physical and emotional.
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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.
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Melbo- I'm going to go with my MO and leave AAMC. Her last day is my last chemo cycle and then I'll hopefully just have the Perceptin infusions until July. I love AAMC infusion center, but I figure I'll be done with the day long infusions and I like the idea of having an MO that has been with me since the beginning. It wasn't an easy decision, but one of my friends pointed out if I regret it I can easily go back to AAMC. So that is where I'm at.
Thanks to everyone for sharing your experiences and letting me know that I'm not alone in feeling a bit lost at the point where I thought I would be feeling excited about finishing up the chemo. I'm pretty sure this is the hardest thing I have ever done and it is nice to have a place where people understand. I hope everyone manages to keep hanging in there.
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These girls keep my spirits up! This round Captain Morgan and his parrots!!! I have to admit the hats bring smiles to other patients and the staff. I never know what these 2 have planned but the last round I plan to surprise them!!
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Hello All!
I thought I would jump in and give a quick update. I just had Infusion #3 of DD Taxol, last Friday. After the first two rounds, I suffered from pretty extreme bone and muscle pain that required Norco. My MO offered to move me to weekly Taxol, but I'm determined to just push through the pain and get it over with quicker. He reassured me that there is no permanent bone/muscle damage being done, so that encourages me even more.
I have my RO appointment lined up for November 16th, with consultation and simulation all in one day - and I'm looking forward to moving on. Tentatively, I start radiation therapy on November 30th.
Moving on after BC is beginning to cross my mind...the word "Survivorship" is bringing me a little anxiety - because I feel like I should "know" how to move on, but just don't know "how" to move on, just yet. My last chemo is a week from Friday and I am getting excited! I've begun researching low-dose Xeloda and plan to ask my MO about it at my next appointment. Now, to just wrap my head around "the end of treatment" and keeping calm and enjoying life in the moment for the next 5 years.
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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.
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I’m freaking out too Melbo. Sitting in the car in the driveway crying actually. Had a good couple of days until the Rad Onc called to schedule a diagnostic CT. Diagnostic of what I don’t know. I’ve had many CTs and PETS that were “clear”but I never trust the results as ILC is sneaky, evades detection, and because my cancer was missed on breast MRI two years before I found it myself, which is why I’m in the boat that I’m in. I’m tired. It’s one year of dealing with scan after scan after scan. Two surgeries. Chemo. I can’t be brave and tough anymore. I’m just scared. I have rarely cried through this. And now I can’t stop,
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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.
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No it’s not the mapping one. I have that first. Then after, a CT. Thanks for the encouragement though. I’m just tired and perpetually terrified. It comes to the surface every time there’s a new scan.
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KMom57, I am saying a prayer for you right now... you're in my thoughts!
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Shar2020 and Anna Thinking of you today and saying a Prayer for infusion 5! May you breeze thru this one with few side effects and see the light at the end of the tunnel.🤗🤗🤗
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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..
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I did my bloodwork today and the good news is my hemoglobin is up so I don't need a transfusion but my magnesium is too low. So I have to get 4 units of it tomorrow. Another 4 hours in the CHAIR!!
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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!!!
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The "look how far you have come" argument leaves me a little angry considering how far most of us still have to go. Sigh. This whole situation just sucks for all of us and the only thing we have to hold onto our platitudes that sometimes make us feel a little better and sometimes just piss us off.
I have spent the last 3 days mostly in bed sleeping and nauseas. After taking almost no naps during round three I was hopeful that round four would be equally kind to me, but instead it kicked me harder than any of the others. I feel like today might be a little better, but I won't really know for another few hours.
I finally called about the rash today and the consensus is that my boob has a yeast infection. They are going to give me a cream to use on it and hopefully that will clear it up.
My other news is that I talked to the surgeon's nurse coordinator and have an appointment to see the surgeon right before my 6th round of chemo. She also said the sweet spot for surgery is 4-6 weeks after chemo, which puts me either the week of Christmas or the week after Christmas. I've had it in my head the entire time that I would have surgery after the new year, so it's a little bit of an adjustment to think it will be this year. Luckily we had no big Christmas plans so it should be fine for us to deal with the surgery either of those weeks.
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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.
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Melbo, hope you are feeling better soon. I’ve really noticed the fatigue in round 4 and 5. My hemoglobin is low and I get out of breath very easy!
Mktspace glad it sounds like chemo will be a go Tuesday.
AnnatheBrave I hope your MRA is negative! Always hard to wait for another test.
Iamloved great pictures! So lucky you have friends that can join you.. my infusion center has no visitors due to Covid.
I have an Echo on Monday and my final TCHP next Friday! Unilateral mastectomy and tissue expander scheduled Dec 3rd. Even though I have been feeling like crap 💩 I decided I am going to be celebrating my last chemo next Friday! I ordered myself flowers to be delivered on Thursday and a little necklace gift to me from me.
Hope you all find small ways of treating yourselves.. we all deserve it!!
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Trynryan...I like you am planning on celebrating my last chemo. In my mind right know I want to have a big cocktail party the evening after my last infusion...while all the meds are still working! I love the idea of sending myself flowers...maybe some chocolate covered strawberries from Shari's berrys! Or a fun Halloween get together as my last infusion is Oct 29th. I just want to surround myself with friends and family for this HUGE milestone. How is everyone else planning on celebrating?
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Iamloved, thank you very much for your prayer for infusion #5! The infusion went well from start to finish. One of my cumulative chemo side effects has been smell distortion so I am now drenched in the stench of turpentine which I have been told no one else can smell so that's a relief. I am glad to read that your hemoglobin improved and you did not need a transfusion.
AnnaTheBrave, thank you for your wishes for a good day after infusion #5. I hope you get good results from the MRA test. Did anyone mention the possibility that the tinnitus is caused by the Taxotere or Carboplatin? I have it in my right ear for about a week after my infusions. Sometimes into the second week, too, but it is mild. I hope all goes well for you.
Melbo, good that you were given a cream for the rash and have the appointment scheduled with the surgeon.
Mtspacekace, hoping your cold is better and your infusion goes ahead on Tuesday.
Trynryan and Iamloved, GREAT that you are planning to celebrate the last day of chemo! 🎊🎉🥳🤗
Wishing everyone the best possible week with minimal discomfort.
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Shar2020 So happy #5 is done for you. The turpentine smell is interesting. I have not experienced that. I know when they access my port and flush it I breath peppermint essential oil so I don't get the metal taste in my mouth. So far it has worked.
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Iamloved - I finished at the end of September and I wish my fiance would have planned something or got me flowers. I kinda celebrated myself because it was a little emotional knowing I was going to be done with that step. Thinking back, I don't think anyone really texted or called when I was finished. I did get all of the nurses some snacks for my last chemo and got to bang the gong... My symptoms lasted almost 2 weeks each time so it was hard to celebrate right after. I want to have a drink sooooo bad to celebrate being done but I know alcohol is a no no with cancer especially estrogen positive. So I've been holding off. All I know is that I want to take a nice vacation next year when everything is all done. I have two more surgeries to go. I hope you're able to celebrate in a fun way!! 🙂
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Ampmusic14 I am sorry that your chemo end was not celebrated. I think only about 4 people actually know when I will finish but stepping out of my comfort zone I plan to to invite a bunch of people. I normally try not to draw attention to events in my life, birthdays, anniversaries but the older I get I realize it is ok to celebrate milestones and this is a BIG ONE for all of us. I wish all of this group could meet when everyone is done with chemo surgery and rads and celebrate together our accomplishments. However that not being possible I hope to remember each of you in my prayers as you finish. So tonight you will be lifted up!!!🙏🤗🙏
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Well, they postponed my infusion for a week. I am feeling really well. My taste came back sooner this round and I’ve been really trying to eat good food...proteins, lots of squash and spinach. I just have a lingering cough today and a bit of a stuffy nose...so it’s probably best to postpone, that way I can make sure I don’t get an infection or something worse. It’s gotten so cold here, and has been snowing for 3 days. We’ve also gotten a covid surge here, and it’s now community spread, my husbands co worker has it, but luckily he figures he was not exposed as he did not go to work last week because he was sick with this cold. We are going to quarantine at our ranch house for this week, as he can work from home...and see what the numbers do for next week. I guess I’m going to look at the positives...I’m pretty bummed that I’m not finishing this week. But I’ll get an extra week of good food, and I’ll be stronger to fight this last round. Maybe it won’t be too bad since I kind of know how to fight the symptoms.
All you ladies are talking about the celebrations you are planning...I would love to, but with the covid spread, I am just afraid that would be a bad move. I have so many friends and acquaintances that have been exposed or have covid. I just hope it all goes away! We’ve been thinking about booking a house in Belize next year for 2 weeks, that may be how I celebrate!
I have never thought about using peppermint when getting my port flushed. I think it tastes like funny bananas. It’s always weird.
Praying for all of you to have a great week this week! Stay safe and warm and healthy!
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mtspacekace…You positive attitude is inspiring. Yes indeed enjoy the extra week with good foods. Belize sounds incredible! I can picture staying in a villa right on the ocean...such a peaceful thought!! Guess I will take sniffing peppermint over funky bananas.😉 Stay well and enjoy your quarantine.🤗
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