Starting Chemo April 2020
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Les- yay about the lypmh nodes!! It's wonderful your hairstylist is willing to come to you to cut your hair!! One thing I remember hearing all the time during my 1st stint wth chemo was eat a good amount of protein rich foods and drink lots of water!! I also brought a blanket with me as the treatments caused me to get kinda chilly. I did not ice hands or feet but guess that will also cause you to get cold. Best of luck tomorrow and glad you didn't have to wait any longer to get things going!!
I hope everyone is staying safe and keep up the fight to kick cancer's ass!!🥊🥊
~Katie💗
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Thinking of Vilija (sunandsea) and Les (hog_co-pilot), who start chemo tomorrow! Woohoo! A big step forward in your fight! We are all with you on your Big Day, and we will be here with you afterwards if you want to talk about your experiences and how you're feeling. Good luck, friends!
And Les, congrats on the lymph nodes!
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Good luck tomorrow ladies! We'll be in your pockets if you need us!
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Been away for a few days and see this group has been busy busy! Great to see the extent of support! For all that I have missed...belated birthday wishes, good luck with the new ports, good luck with the ongoing chemo sessions and managing all the side effects!!
Since we are all on slightly different protocols, and even if we were on the same protocol, our bodies will react so differently but each bit of little information we pass on to each other can be so helpful, comforting, and insightful.
Jess - I’m on the weekly Taxol and carboplatin protocol and every third week I get the herceptin and perjeta. I feel the same as you...Day 3 and 4 are the worst days. So much nausea, fatigue, some abdominal cramps. It’s actually amazing how the body responds.. goes through the slump and comes out of it. So far I haven’t taken any meds for the nausea. I try to control it with changing the times and amounts that I eat. Of course drinking lots of fluids helps too by flushing the system. No caffeine on those days. I also develop acne on day 3 and 4! Which appears, then flares up and subsides leaving an aftermath of some scars by the end of the week! Super crazy! Keeping up with my yoga practice, focusing more on the breathing practice, and going for regular walks has been a huge help.
Am now done with 4 weekly chemo sessions. Have a total of 17 to complete. Almost 25% done!
Best wishes to everyone as we close April and move into May tomorrow!
Zarin
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Debra - yes, glad to have you as a "partner" through this! I have not had surgery yet. They will do it after the 6 rounds of chemo, so sometime in the fall. Because they know I have it in at least one lymph node, that dictated that the chemo be done before so they can see how it all responds. I just saw that you have two different lumps, with completely opposite receptors! I would be curious how that dictated your treatment plan. The TCHP is for those positive receptors. I am opting for the double mastectomy because I don't ever want to deal with this again, and that seems like the best way to move in that direction.
Allie and Debra both - I hear you on the hair! Someone posted a great article earlier in this thread about HOW to buzz it. The two things that were really good were NOT to completely shave it, but to Buzz on the #2 comb, which is 1/4 inch. That helps preserve and protect the follicles. And then to just run a lint brush over it every day after, if need be, to pick up any stray hairs. I will say that once I buzzed it, I am noticing WAY less coming out. So, so far, I'm just thinning. Still also have my eyebrows and eyelashes, so we'll see how that progresses.
Lise - my port is just to the inside of my bra straps, thankfully. If I put a sports bra on when I exercise, that strap does sit on the edge, so I'm just putting a wound pad over top to stop any irritation. I'm hoping that won't be necessary all the time - but I'm just 3 weeks out from surgery and still have a little bruising. Same strategy at home - braless!
Les and Vilija - Thinking of you today! And YAY for clean lymph nodes, Les!
Erin - Round 2 for me on Friday, too. I'll be with you in spirit.
Jana - I also felt really well in Week 2 and Week 3 - so hoping that happens again. Can I ask how they discovered the Mets with you? I'm also Triple Positive and am nervous about that. So far, they have not suggested anything to check that. I did have a breast MRI and they saw nothing in the left breast, and nothing unusual that would indicate any spread beyond the tumor and the original 1 - 2 lymph nodes. But I would like to hear how that progressed with you so I can advocate for other testing. So glad to hear your tumor markers dropped! Great news.
Kris
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Wow! Everyone!
I am just back from round two of my chemo regimen and am catching up.
Debra and Kris: thank you. re: mild nausea and when to take the Compazine. Nurse told me that if I was thinking so much about taking Compazine for nausea, then I should just take it. I had the opposite view, but I'll pay attention to what she had to say. I was given an RX for the heartburn, which I suspect will help a lot. She also recommended that I fill my prescription for the lorazepam...it can help take the edge off both anxiety and a number of side effects. And the hair...I don't have a way of buzzing it so it will be coming out "au naturel" I have a plan that won't result in the giant mess I had to deal with today! I had enough hair out this morning just by brushing that I could make a WIG! And I still have quite a bit of hair on my head actually - I should NEVER complain about thinning hair again!!! The nurse said I could try to just chop it off a little shorter, but you know what, I'm very lazy and also afraid of sharp objects at this stage, and so I think I just let things be and test the "au naturel" plan. Wore chemo hat to chemo today to make sure I didn't leave a "fur trail"!
All: my continued best wishes and gratitude.
Allie
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oh Allie, bless your heart, wish I was closer, I’d buzz your hair. 😘 I’ll be discovering what it’s like soon. I’m taking my new MO’s advice and will do the “real Herceptin” and add 12 Taxols.
Your chemo nurse has good thinking, if you’re trying to decide if you need the anti-nausea you already do. One suggestion ... since you are by yourself, write down when you take medicine so you don’t accidentally take something twice. I’ve done that before, Easy to do when we don’t feel well and with the chemo fog they say is coming, we’re more likely to do it.
Hope you’re able to rest tonight.
j
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Authorspot — been thinking about you. Hope you're feeling stronger after getting out of the hospital. I'm sure your sister coming today is helping brighten your spirits.
j
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Happy Rainy Thursday,
It's been raining all day here ...... so gloomy. Trying to keep a positive mind set but this weather isn't helping.
Jana, happy you are through treatment #2 and your tumor markers were cut in half ~ that's excellent and encouraging news !! I have felt my lump go down just on self examination. I have heard that with this regimen that happens. It is very effective.
Kris, my previous bout with breast cancer was exactly 10 years ago. It was IDC and I only had to deal with lumpectomy, radiation and five years of Arimidex therapy. This is a completely new cancer. ILC and the HER2 + receptor. It really caught me off guard as I was literally 10 years out !! I too was encouraged to go into treatment first to make the cells behave quickly ...... and I can already feel that they have !! I also had lymph node biopsy and PET Scan and learned there was no spread anywhere, thank the Lord. So grateful. I was all too happy to go into neoadjuvent therapy first as I could feel the changes in my body with the HER2+ receptor. The lump which was small to begin with is almost gone. And yes, as soon as I can I want the double mastectomy. with no reconstruction. Just want to be done with it all and enjoy my new grandchild due in July.
Allie, glad you have treatment #2 behind you now too. Take whatever meds you need. That is what they are for and when this is all over we can all get our bodies back to a healthy natural state. But for now, drugs and meds are necessary. I found out quite by accident that we have the tools to buzz my head. My 21 year old son found that our dog grooming kit did the trick for his hair when he couldn't get a haircut anywhere because of this Coronavirus. Who knew ?? Maybe one of your family or friends have one laying around you could use ? I hope so because the struggle is real with this hair coming out. I'm not sure I'll make it to Saturday. I ordered a few head pieces from Headcovers.com and they should be tomorrow. Do you have a Neulasta patch ? I did, 27 hours after treatment it goes off automatically. It was kind of cool !! Get some rest
Les, How did you make out ? Hope you're feeling good and back in control !
Debra
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Well, I think I’ve about made it through Round #1! I’m at my Cancer Center waiting on the last drops of Carboplatin to empty. I was super scared because the day didn’t start like I thought it would. I thought I’d meet with my doctor or nurse, get results on everything (scans, etc. ), discuss my questions, and then start chemo. Not how it went. I came in and was kinda treated like I already knew the drill. No one talked to me and just started to draw blood from my port. I still had my Steri strips in from surgery on Friday. I freaked out and started crying. The chemo nurse came and talked to me a little and I felt better. Once the chemo got started, she sat down with me to answer my questions. I feel a lot better now.
My advice for anyone who hasn’t been through this is to contact your chemo doctor or nurse and ask to be walked thru what you can expect on your first day. I assumed that since no one called me to do this that they would do it at my first treatment. Don’t be afraid to speak up- or cry in my case- and respectfully request that everyone slow down and walk you through what’s going to happen and answer your questions.
I’ve already asked for a rundown of my next appt. I won’t make that mistake again.
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Les — glad this day is behind you. Hope you can rest tonight.
j
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Debra, Les - some remarks specific to you,
First, thank you.
I will just see how far I get with the "Allie's Au Naturel" plan. It should be a hoot. I'm sure there would be somewhere to get the equipment but then I'd have to deal with all the drama I can easily create around this...I've never buzzed myself! Tomorrow I'll have a lovely shower, let the hair dry, and have a brush out that will remove I am guessing at least half of what is left! And then, I am probably going to feel so victorious I will write a book! No seriously, I may just post a picture!
Les: I am so sorry about the chemo session issues and happy that you are feeling better about this. I wonder if what could be at play here is that your chemo center may dealing, like every medical provider, with issues related to covid - trying to implement all the stepped up safety measures, trying to maintain staffing, trying to adjust patient schedules accordingly, and the like. But since you mentioned, I never was told explicitly what an actual chemo system would be like -- other than the drugs that would be used and how to manage the affect effects, etc. - and actually I wondered about that during my chemo prep...It would be nice to actually to include that..
Neulasta: in my case, the doctor preferred I have the injection. They offered to teach me to do it myself and I took them up on it. I found it relatively easy for me to do, and painless, which totally surprised me. I think the the thought of doing something that will pump up the WBCs really motivates me to do the best job I can with this. I take Claritin as advised and so far have had no pain from Neulasta.
Bless you all!
Allie
P.S Kris, I am with you! We need to be good caretakers to ourselves. I think there's both value and some negatives in wanting to "tough it out." My queasiness eventually went away and so I did not take the Compazine. Priolosec may be just what I needed. I will continue to monitor and try to just trust everyone. This is a lot of medicine for me who balks at even taking Tylenol...
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Allie, I’m so glad that you haven’t had any negative effects from the Neulasta! That’s awesome!
I have a couple of TMI questions for the group:
1) Did you guys pee a lot during and after chemo? I have a TINY bladder anyway and am known for my frequent trips to the bathroom, but today has been on another level! I bet I made 10-12 trips to the bathroom during my 8-hour chemo infusion. It’s still going now that I’m home. I don’t feel any pain or burning. It’s just lots of peeing. The nurses didn’t act like it was a big deal, but I haven’t read that increased urination is a side effect. Like I said, I’ve always had a tiny bladder and I’ve drank 3 20 oz Gatorade Zero bottles and a couple of bottles of water today to stay hydrated, but I’m seriously getting a workout from my trips to the bathroom! 😂😂
2) If you take Herceptin and are premenopausal, did you still get your period during treatment? Because my cancer is 99% responsive to estrogen (literally), I can’t take birth control anymore. The only reason I was on birth control is to stop having periods as mine are awful. (My husband and I went through several unsuccessful rounds of infertility treatments so I don’t need the birth control to actually prevent pregnancy. In fact, my doctors believe that the infertility treatments probably contributed to my cancer. ) Anyway, just curious if I’ll get my period during all of this Herceptin.
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I’ve been missing for a couple of days and you ladies have been busy😃.
Les...I am so sorry chemo 1 went like that. My 1st infusion my nurse did such a good job walking me through everything she was doing as she went along. She explained each premed and what it did to help. It made me feel so much better especially since I was alone. I’m so sorry!
For those talking about nausea or side effects my chemo teach was done by the pharmacist that mixes my chemo each week. I’m not a medication taker and tend to prefer a natural approach. He told me to let that go and not be brave. I have zofran and compazine for nausea and he said if you even think you are nauseated take the zofran in 30 minutes if you don’t feel better take the compazine. He said they do different things. I have never taken the compazine but I do take the zofran before bed the first couple of days because I have a fear of waking up nauseated. I have never hit the point of having nausea bother me. He also said if I start to see my nails get yellow/brown or I start to feel tingly in my fingers or toes let them know immediately. He said there is room for adjustment in dosage and they can help when you first notice but if it gets bad it’s hard to go back. I’m a big baby and have no problem not being brave. Just thought this might be helpful.
I know someone asked about scans. I have one lymph node with cancer that we found in the ultrasound and a PALB2 gene mutation so I had a CT and bone scan along with mri and 3D mammo on the breast that did not have cancer before starting treatment. All the scans were clear...it was the most stressful wait ever.
When I was reading up before starting chemo a common theme for people who did well with minimal side effects was high protein, tons of water and keep moving. I’m doing my best to do those things.
I had to clip my hair and it was the worst. Trying to get used to wigs. I was able to find a wig shop that was open because they are durable medical goods. I highly encourage a visit to a professional. The lady who owns the shop is a breast cancer survivor and was so helpful about caring for my newly clipped, soon to be bald head. I have a wash that will exfoliate and a natural scalp oil. She said breakouts often happen because the chemo nastiness. It was such a positive experience.
Hope all of you continue to do well. We can do this!
Heather
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Hi, Heather!
Thank you so much for the information! I’ve been given similar advice- chemo is no time to be a hero. Take all the meds and ask for all the help! This is definitely something that I need to hear. I played sports in high school and was raised as a “walk it off type girl,” so it’s against my nature to take meds and ask for help. Gotta work on that!
Thanks again, Heather!
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Hi, I started chemo April 2. My regimen is TCHP for 6 cycles every 3 weeks, so I've had 2 cycles. I just found out about the April Chemo forum from the Triple Positive Forum. Glad I found it.
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Oldest4Sis (Michelle) - [Delaware, USA] - 04/02
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Les- I'm sorry your first experience with chemo was not good and resulted in you getting upset, which is totally normal- the upset part. The increased urination is very common, just think of all the medications in IV form you received today. It's actually really good that you are peeing alot as it will help flush your chemo meds out better. Great job with the extra fluid to!!
Welcome Michelle!!
I hope all you warriors are staying safe and keeping up the fight to kick cancer's ass!!🥊🥊
~Katie💗
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Michelle,
Welcome !! I am also on the TCHP regimen. My second treatment is this coming Wednesday May 6th. This website has brought much comfort in solidarity for us all.
Was wondering if your 2nd treatment was better/worse than your 1st ? Will your double Mastectomy follow your 6 cycles of TCHP? That is my plan. Hoping for early fall.
This looks l like your 2nd bout with breast cancer ? Me too !! Mine was April 2010 and April 2020 ??
Debra
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Hi Michelle — glad you found us. The Triple Positive group has provided much info to me too. This is a marvelous group of women brought together by something we all wish we didn't have.
I had my first infusion April 1. Things did not go well. I have a new MO and will try again next Thursday.
When is your third infusion?
j
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Debra - thanks for sharing all that. I also have my first grandchild coming in September! It's an exciting time - congrats on yours! Definitely that HER2+ changes things. They don't mess around with that. Mine also feels smaller to me after the first chemo, but I don't want to get to focused on that until after the 3rd treatment when they will do another ultrasound to really check. I have Round 2 today but will meet with the MO first - and it's on my list to ask him about plans for the PET scan, since I definitely had one lymph node test positive in the original biopsy. They just did the one, but there is a 2nd one sitting right on top of it and it looks similar, so they are pretty positive that it's positive also. Hopefully with the pre-surgery chemo, I'll be NED for those at the end. That's the prayer! And your story of the 10 year recurrence is why I'm opting for the double mastectomy right out of the gate.
Allie - good luck with the hair plan! Make sure you clean out that shower drain. I have very thin hair anyway, so there was no chance of just letting it fall out naturally for me. Definitely ask around about clippers. I have a husband and 4 boys, so I have been cutting their hair for years so we had the tools. My husband was happy to do the deed and have some role reversal! My naturopath gave me a powder to take for heartburn, and I've actually found that a Tums or two really helps me, so I'm holding off in Prilosec for now. I've also discovered that the heartburn is directly tied to how empty my stomach gets. So I've really been focused on eating something small every couple of hours and that really makes it not flare. Just something to try.
Les - I'm SO sorry about your first treatment - that would be awful. I'm glad you found a nurse to talk to you. My practice sent me a packet ahead of time, and then they have a nurse that calls you and does a 1-hour Chemo 101 session ahead of time. That helped SO much. My husband and I had her on the speaker phone and she walked me through my plan and we got to ask any questions. I would ask your practice if there is someone that can do that. I bet the COVID is messing with their system. I hope Round 2 is better for you. Also - the peeing - it's because you're drinking all those fluids! I'm the same way - teeny bladder. And I really push the fluids in the first week - I bring lots with me to the infusion center. I want that stuff in and out as fast as possible.
Heather - thanks for the info. I asked about the scans. I did have a detailed MRI of my whole chest area before chemo and it showed nothing more than what they found on the biopsy and the ultrasound. Nothing on the left side at all. I'm asking about the CT or PET today - it's been mentioned as "something down the road" but I would like to know.
Michelle - WELCOME! We have the same diagnosis with the Triple Positive and I'm on the exact same treatment regimen, a week behind you. Round 2 today. Same question as Debra - how was Round 2 (the aftermath) and the plans for mastectomy. My plan also.
Kris
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Hi J,
I'm sorry your first infusion didn't go well. Hoping next Thursday goes well for you and you have a good plan moving forward. Looks like you have had a lot of challenges with your breast cancer diagnosis. If it's one thing I have found on this site is so much hope no matter what stage our disease is classified. It's our cross to bear in life and we find our strength through knowing we are not alone in this fight. Yes, a club nobody want to belong to .... but then so many strong women surround each other even for a little while. Gives you strength to go back to daily life. I hate my hair is coming out. I'm going to look so sick and I don't feel sick. I feel hopeful for my future !! I will learn how to navigate this damn thing and get back to Life as I knew it !! Thankful for this site, great doctors and nurses and these drugs that will help eradicate these cells in my body that are ~ correction ~ WERE misbehaving.
Debra
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Kris - thank you. Excellent responses to so many! I really need the Prilosec I've decided. No trouble so far since I started it at around 1:00 pm yesterday. I also have what was called a small hiatal hernia diagnosed years ago and I thought it was amusing my doctor said that sometimes the little ones can cause a lot of symptoms and yet the bigger ones do not! I also tend to get heartburn if I get extremely stressed (hard to tell the difference from normal with me sometimes...). And the MRI revealed what they think are gallstones now but have a history of polyps in that area. They do not think they are symptomatic now. I wonder about the "amped" up feeling of steorids...they are rx'd for me specifically for nausea...hmm...anyway...we soldier on...
Good suggestion on the drain (and ALL)...ugh...shower drains...
Thank you and blessings to you and all.
Allie
P.S. Has anyone heard from Jess? I might have missed an update on her port procedure or is that on Monday next? (I'm a little fuzz brained today...)
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Hi ladies,
Just checking in with an update on my first chemo infusion (TC) yesterday. Overall, a fantastic experience. Seamless afternoon where I started with labs, then a visit with my MO who examined me and walked me through what to expect, and then I headed to the infusion clinic next door where I scored a private room. The nurses were so helpful and enthusiastic and made me feel right at home. Since I was alone, my little rolling suitcase came in handy. Felt super independent and prepared with food/electronics/comfort items...plus my ice packs for hands/feet and the staff provided ice chips for my mouth. I've learned so much from all of you (and from that terrific TC tips post) and it all helped me get through round 1 of 4.
Staying on top of my zofran today and going to finish my steroids (very low dose) and pop a Claritin before this Neulasta device stuck to my arm kicks in later today. The best part so far? No side effects. Long may it last.
I'll be on again with a 2nd post in reply to everyone else.
Take care,
V
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Hi Heather, good to know high protein can lead to minimal side effects. I've been drinking lots of water and trying to walk daily but will definitely amp up my protein intake. I guess the cinnamon buns my daughter baked last night don't count.
With the pandemic, the whole pre-education leaves a bit to be desired in some cases. I remember attending a chemo class the last time and a friend joined me to take notes. It was a couple of hours and we also got a tour of the treatment areas as well as met with a pharmacist. That was done a week before chemo commenced. Fast forward a decade later..there was no class or anything. I remembered some things but had forgotten a lot of details. I've managed. I'm one week out from my second treatment.
Hope everyone is managing as best as possible given the circumstances.
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Thanks, Katie! That makes me feel better!
Welcome, Michelle! I hope you get a lot of information and make lasting relationships with this group!
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Debra - thank you for your thoughtfulness. I noticed your dx were ten years to the month apart; mine were three years to the day. I’ve had a couple months to acclimate but you’ve and many others found out only a couple weeks ago. So much to absorb and make decisions so quickly.
I’m off to CTs. This cancer gig is a full time job for us.
j
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Welcome, Michelle (Oldest4Sis)! Glad you found us- this is a really wonderful group! I've added you to our Roll Call at the top.
Les: Sorry about your rough first day, but it sounds like it ended better. And congrats on making it through your first chemo!!! Great advice-- you're right, we can't be afraid to speak up! Erin (Hurricaneblair) wrote a great post earlier about empowering ourselves to take the lead in our treatment—I suggest scrolling back and checking it out. About peeing: Yes! I have to go like every two hours, and often get up in the middle of the night (sometimes twice), too. I don't actually mind it—I'm proud of myself for pushing the fluids so well and getting up to pee in the middle of the night gives me an excuse to drink more! Remember that the chemo drugs work the instant they get in your blood, so it's not like drinking lots of fluids will water down the strength, lessen the effects, or push them out too soon. Those nasty drugs can get out ASAP! About periods: I am not on Herceptin, but chemo in general often brings about menopause. I stopped birth control for other health reasons like a year ago, and like you, I'm 100% responsive to estrogen! I have gotten my period once since chemo, but my doctor said not to be surprised if I don't get the next one. So we'll see!
Vilija: Great to see your pics from your first day of chemo! Doesn't it feel good to finally get started?? Keep us posted on how you're feeling.
Allie: Hi! Thanks for checking on me! My port surgery is this coming Monday morning, May 4th. I do the COVID test today! I'm excited for the port, but I didn't realize I have to pay for it… I thought it would be totally covered by insurance but there's a 20% (or something, I forget) co-pay so I had to fork over like $350 for this thing and now I'm a little bitter about it. (Kinda like Kris's love/hate relationship with the port, mine is starting off a little on the hate side, haha!) Hey- I'm looking forward to a pic of your haircut!!
Jana: Glad to hear from you again and that you've been feeling so great! And 6 cycles instead of 8 sounds awesome. Congrats!!
Heather: Your post was really helpful- that bit about not being brave and letting go of hesitancy around medications. That message is really good to remind myself about because I think we all have the tendency to hesitate and think, do I really need this? Or to downplay the pain or discomfort. When there is often a simple solution that our doctors are offering us. Also the simple tips of "high protein, tons of water and keep moving" are also what my main goals are! But I also added "get lots of sleep" because I truly believe that we heal the best in our sleep.
j: It's so good to hear from you again! Your warmth and Texas hugs&kisses are such a nice part of this group!
Kris: I like the idea of eating small things more often instead of regular meals far apart-- that might be a good idea for me to try even though I'm not having stomach issues right now. I think I remember that Zarin also talked about something similar- smaller meals and intermittent fasting. This group helps me with so many things that I didn't even think about to ask.
Lise: Thank you SO MUCH for the advice on port placement. I didn't think about it and now I'm going to draw on my skin where the bra goes so that we don't mess that up on Monday's surgery!
Zarin: Thanks for your note! And congrats on 25% done! Me too, as I just completed 5 out of 16… woohoo! My theme for chemo session #5 was Dance Party Day because I was feeling so good about how far I've come and how decently well I've been feeling so far!
Sherri: Yeah I totally know what you're talking about with the differences between then and now. When I received my diagnosis in February, the hospital told me about all the prep that was offered, the groups, services and other things, but then in March, literally everything was closed or cancelled due to the health crisis and quarantine. Weird and disappointing. Also, just you mentioning cinnamon rolls set me off on a huge craving! Now I need to make that one roll of refrigerated Pillsbury cinnamon rolls tomorrow morning!!
Stacey (Authorspot): Thinking of you! It's been a couple of days since you were released from the hospital and back home, and I hope you're feeling better!
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V,
Great photos! You look ready for everything!
Allie
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Debra talked about using a dog grooming kit—I did, too! LOL. Had to borrow one from my dad that he uses for his dog, haha! My boyfriend (long-time partner but we're not legally married) shaved HALF my head and trimmed the other side yesterday. We were gonna do the whole thing but, honestly, he did such a good job and it looks cool so I'm keeping it for another few days before shaving the other half! Here's a pic:
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