Topic: Starting Chemo May 2020

Jul 5, 2020 04:40AM KeepingCalm wrote:

Shauna, I'm sure it's a change, but your short haircut looks great! I went direct from shoulder length to buzz but when it was clear my hair was on its way out but I'm on a different chemo regimen where hair very predictably falls out 14-17days later.

Angela, you also look great! Is your hat also from Dear Martha or somewhere else? Did you style the hair yourself?

Paula and Judy, sounds like you’re getting there in terms of getting beyond the midway point in treatment. Hope you’re doing well!

And Sabrina, hope you’re doing better this week. Are you expecting you’ll be able to move home within the next few months?

I’m doing fine. With a little luck, my final chemo is scheduled for July 16th.

Jul 5, 2020 09:14AM Smichaels11 wrote:

Hi All,

I am on day 5 (if chemo day counts as 1) and I am still so exhausted! The back of my throat burns a bit so eating and drinking is annoying. I tried some decaf coffee which I normally love but had to pour it out. Im just thankful to be off the daily rotation of pills today! Obviously were in the thick of summer and I just want to be outside and enjoy the hot weather! Sorry, just a bit frustrated at my limitations at the moment. Is there anything you did in particular to boost energy? Can I expect to be feeling better soon? The nurse said days 3-5 were the worst.

Jul 6, 2020 03:13PM Smichaels11 wrote:

Today was my first day really having to focus at work (I am working from home right now) and I only made it to noon. I couldn't focus on anything and nothing felt important. I HAVE CANCER was screaming internally as my peers and reports were droning on about things that just didnt feel important.

I will try again tomorrow, but it feels insurmountable. How do you care about.... anything.... after something like this? How do you move on? I feel like my days are numbered and I fell down a YouTube rabbit hole of young moms with breast cancer saying goodbye to their children. Ahhh why did I do this to myself?

Sorry, I am definitely having a day :(

I actually found some solace in reading the stories of Hoda Kotb, Robin Roberts, and Christina Applegate.

Jul 7, 2020 06:44PM KeepingCalm wrote:

Shauna, I can very much relate to some of the thoughts and feelings you described and how scary this can all be. I can say that I am finding it gets better with time. Those thoughts aren’t gone but I do find that as time goes on and I proceed through my treatment I adjust. I’ve also met with my center’s social worker a few times to talk and have found that very helpful. Still, I catch myself feeling “jealous” of others leading happy hour lucky lives and have to remind myself that lots of people have struggles, many times that you’d never guess from appearances. And Sabrina, you’re right that being mindful of things I can be grateful for and just more present to positive moments is something I’m learning and I would admit those aspects are surely making me a better person and parent! (Not that we’re required to learn something from a bad luck situation)

Speaking of bad luck! I was doing great this chemo round until I fainted in the shower after a 3 mile beach walk (which I felt good for and enjoyed but apparently was over doing). I have no recollection of feeling faint and got pretty bashed up - needed a laceration near my eye stitched in an unfamiliar ER because we were a few hours away from home and then they were concerned about a possible blood clot so did a bunch of scans (which I would have rather not had but oh well) and then observed me overnight! The good news is all came back normal and they suspect I was dehydrated. Scary though! And now I feel super fatigued which is getting me a bit down. I’m inching closer to my last chemo though which is a plus.

Thinking of everyone

Jul 8, 2020 04:49PM Smichaels11 wrote:

keepingcalm, oh my goodness I am glad you are okay! I hope you will still able to enjoy your beach days!

Thank you for the kind words! I work myself into fits that I'm going to die and have to talk myself out of it by reminding myself that I am curable and must need to get through this temporary nonsense so I can move on and grow into old age!

Jul 10, 2020 03:43PM PJAL wrote:

Hello Everyone, finished round 9 of 12 yesterday. Feeling ok - still on steroid high. Number 8 kicked my you know what.

Shauna - I am sorry you are feeling down. It is very scary. I had the same emotions and still do, but it's definitely gotten a better. I think we all have good days and bad days. I did the same thing with reading the stories on the internet. I was addicted, but a friend told me to stop reading the stories and focus on the positive things. When I wanted to jump on the internet, I had to force myself to put it down and focus so I started doing little positive things like sitting in the sun for 15 minutes or walking around the block - anything to not google. The internet really put me in a depressive state of mind and you really never know what's real as someone once pointed out. It was hard to break for me, but once I did my mindset became much better. Are your treatments once a week? I am doing 12 treatments once a week and the first week was brutal.

KeepingCalm - I am so glad you are ok. That must have been really scary. I am glad the scans came back normal. I hope your eye doesn't look too bad and it's not painful.

Have a great weekend everyone. Will be thinking of you as we power through!

Paula

Jul 12, 2020 12:53PM KeepingCalm wrote:

Sabrina, I hope you begin to feel better soon! In terms of your question about your MO, like you I think, my chemo is once every 3 weeks. I have an appt with her the morning of each of the chemo sessions where she goes over my bloodwork and we talk about how I’m doing and then sends me off to the infusion. I haven’t seen any doctors checking up on patients in the infusions, although it has occurred to me that that would be nice! My MO’s nurse is very responsive over email and it seems she will always email back the same day (and is the best way to get an answer from the doctor herself outside of an appt). However, fortunately my doctor has been very open to scheduling an extra appt if I need one, although she seems to only offer appts 2 days a week. I hope you can get in with your doctor. I can imagine you feel adrift if she hasn’t been in touch. It’s also a bit funny because I feel like when I see my doctor I’m at my relative best - mostly recovered and on steroids! But then after the fact when we’re in the thick of it, we’re not in touch. I feel like it would be nice if they had a nurse call you a few days into each treatment to check in.

Jul 13, 2020 04:59PM Sabbymama wrote:

Thanks Angela and KC for your input. I actually got a response from my MO last night and she apologized for not having been in contact, saying she can't understand how that happened....lol. Anyway, we will meet next week to chat about my treatment thus far and moving forward.

Angela-- I hope that you are feeling better now and that this won't be the norm on your new routine! How many rounds of AC will you have again? The radiation stuff is very scary and I am quite nervous about it too. My skin is already so ridiculously sensitive and I'm pretty sure that it is going to be very bad for me :(.

Today I am feeling physically much better, but very down in the dumps. The news about Kelly Preston's passing was rough for me. Learning that she passed after a 2 year battle makes me worry that I am wasting critical time. Being separated from my family for the last four months with no idea when I'll return feels like an eternity when put in the context of her battle. If that wasn't enough, I learned that one of my former colleagues also passed away from BC last month. She was 51 years old and a beloved mother, teacher, and all around amazing woman. I am just feeling like life is way too short and I really want to go home and be with my husband and younger kids. It feels like I am robbing them and myself of very valuable time together. This is so hard. Staying out of the "dark place" inside my mind is getting very challenging and I think I may reach out to the social worker or a therapist this week. Trying to just keep things in perspective! Thinking of all of you, many of whom are so much younger than me with young children and so many responsibilities, reminds me that I am lucky in many ways and that this journey could be much harder, but sometimes I just need a good cry! Today is one of those times. Hugs and love to you all!

Cheers,

Sabrina

Jul 16, 2020 05:57PM KeepingCalm wrote:

Hi everyone,
Just reporting some light at the end of the chemo tunnel. I had my final infusion today and am feeling a certain sense of relief but also like Sabrina know there’s the recovery time so am intent on taking it easy as much as possible to avoid any unnecessary speed bumps this round.

Sabrina, I’ve been thinking of you and do hope things are improving for you all around. It’s hard to cope when you’re feel physically crappy too.

Paula, how are you doing? I guess those of us in the DC area can brace ourselves for a hot weekend perfect for recuperating on the couch in some strong air conditioning!

Thanks for all of the support along the way in this ladies. It’s been so helpful to me

Jul 16, 2020 06:36PM Angelanotangie wrote:

Congratulations KeepingCalm! I hope you got to ring the bell at your last infusion. I saw it for the first time on Friday and I almost teared up in anticipation of my last one. I have 3 more AC infusions and will be done on 8/21.

I’m feeling a little better every day, with today being my best day so far. I get my 2.5 year old grandson overnight tonight so I’m super stoked about that. He brings so much joy into our house!

Jul 17, 2020 03:22PM - edited Jul 17, 2020 03:23PM by UnrealTarHeel

Just a hello from NC to all of you amazing women. It's rotten, but we are doing it. Tuesday was Taxol 10 of 12, so "only" two more to go. It's really feeling very, very, very long and I'm beyond ready to be done. Of course, I have to go back in week 13 for a dose of Herceptin, which feels terribly unfair... And an echocardiogram at the end of the month to make sure my heart is holding up ok. And a consult and simulation with the radiation oncologist on Aug. 4. It's never going to end, is it? I keep thinking what friends who have gone through this before keep telling me: You just have to show up.

KeepingCalm: Congratulations to you. What a huge milestone!

Sabbymama: Roller coaster doesn't begin to cover it. It's just hard and I hope you have found a way to have some light in your life this week.

Angela: That face! So sweet. Thank you for the boost.

All: Best wishes to you for as safe and restful a weekend as you can muster. Onward.

Jul 18, 2020 07:30PM KeepingCalm wrote:

Thinking of you Judy. Glad you checked in! I can totally relate to the “just show up” piece and in fact in an emotional moment with my MO a few weeks ago she encouraged me saying I was doing really well just by showing up and said she’s had to chase after a number of other patients to comply with the treatment plan! All to say, even if you’re dragging yourself kicking and screaming, you’re doing it and it will come to an end!

Paula, i guess I may be the first “graduate” although if it’s any consolation I am definitely feeling the effects today! Neulasta again - the combo of chemo and that thing just seems awful! At least I now know this too shall pass!

The Facebook idea is a really nice one. I’ve actually connected with some of the April chemo women through their private FB group since I was right onthe cusp of April and May. I’ve found it to be really supportive and would enjoy having a group for our May group too if anyone else is interested. Only hitch is I have no idea how to start one! If you know how to set it up Paula, I’d be happy to join 😀

Hope everyone else is continuing to hang in there!

Jul 21, 2020 04:26PM Sabbymama wrote:

Congratulations Christie on finishing the chemo phase of your treatment! Sounds like you still have quite the journey ahead of you and I sympathize with that ;).

Keeping Calm--- I hope you are over the worst days and starting to feel better :).

Angela---Your grandson is precious!

Judy---Keep showing up and being strong... you got this!

Paula---I love the FB idea and I am definitely interested.

I met with my oncologist today (for the first time in 7 weeks!) and she expressed some concern about why she only ordered 4 rounds of TC and wants me to consider 6 . I hope I have talked her out of it by reminding her why she chose only 4 (low oncotype score), because my last round is supposed to be next Tuesday and really want that to be done! She is setting up an appointment with the RO for me (hopefully this week) and said she will start me on hormonal therapy once the chemo is complete. 10 years of hormonal therapy....ugh. I mentioned my concerns about recurrence and my desire to have a prophylactic on the right side and she urged me to consider doing that before rads start. A lot to consider. I feel like it is still going to be months before I can go home and it is stressing me out! Tonight I ordered Cheesecake Factory for dinner to treat myself and the Door Dash brought my kids food, but not my salmon.....grrrr! I can't win today....lol. Big hugs and good vibes to you all!

Cheers,

Sabrina

Jul 21, 2020 06:37PM Sabbymama wrote:

Keeping Calm-- No cheesecake....lol. I don't have a sweet tooth! Thankfully I did order an appetizer of Korean Cauliflower for us to share, so I ate that as my meal ;). That's the second time this week I have had nothing but cauliflower for dinner! I'm glad you are feeling better and regaining your energy!

I have actually never seen my Oncotype score (don't get me started) report, but during a virtual visit with my MO back in May, she phoned the BS to get the score and was told it was 13, which led her to order fewer rounds. Today she tried to pull up the report for me in the system and couldn't find it. BS never scanned it in! She vowed to get me a copy by the end of the week. My MO feels that due to the 4 positive lymph nodes and extra nodal extension, she should have ordered 6 rounds and in all fairness, she may have warned me back then that she reserved the right to add more rounds after 4, but I had hoped she forgot about that.....lol.

Cheers,

Sabrina

Jul 24, 2020 09:24AM PJAL wrote:

Hello Everyone. Yes, I can set up the Facebook group. Can you think of any great names for our group? I have been thinking of names for our group, but really haven't come up with anything that I think would be good. I like the idea of a second administration. Any volunteers?

Christie - CONGRATULATONS! I know that must feel pretty good. I think MO's can be so confusing and it stinks that we are not allowed anyone in with us during our meetings so the other person can hear. It seems that everyone hears things differently and the person who can't remember it all, even while taking notes, doesn't remember everything. It seems like we've asked the same questions and you're right. All statistical data.

Sabrina - How are you feeling? You are on quite a rollercoaster. Will it ever end? I think it will, but I think this COVID situation has a lot to do with the lack of communication. I am so glad she is setting up appointment with RO. I had a unilateral mastectomy too and am considering removal of the good girl for the same reason. They were already postponing some surgeries and I didn't want to be in a position where my surgeon said no and postponed the original surgery which was in April, during the peak of the cases in Maryland.

Judy - I had my 11th yesterday. Final is next week, if all goes well. I received my weekly call to go over COVID screening and reminder about the continued restrictions. The person confirming remembered me and my major melt down over Herceptin when she called to remind me about my first appointment. She said she was so happy that I had only two more and I should ring the bell. First, I have not seen a bell. There are two infusion sides which are on the same floor, but one is North and the other South side which I learned yesterday. I am usually on the North side and have had only one infusion on the South side which is a much better view of the Baltimore Harbor. Like you, I told her I would not be ringing any bells until after I finish the Herceptin portion 9 months later. She said, "oh just ring it twice". Um, no thank you. I will ring it once if at all and that will be after the year is finished. I am a bit superstitious as well.

Have a great weekend. I am thinking of you all. I will start looking into a private Facebook Group.

Paula