Starting Chemo April 2020
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Sunday...Mother's Day...
I send Mother's Day greetings to all on this day.
Les - your words bring up so many feelings...
Feelings....
You have nurtured the world and lifted it up so many other ways. Thank you.
Some are fortunate enough to have their mothers with them today.
Some have struggled perhaps with difficult relationships with their mothers.
But I think of the time when a mother first holds her baby...all is pure love, promise...
The strongest, most indelible moment I have of my mum today...
I came home one day after facing a particularly rough situation and for some reason...
she was right there at the door and opened it to me.
We faced each other and looking into her eyes, I saw everything...felt everything...
We hugged. I have never felt such love.
It was one moment in time that now lives in my heart forever.
OUR mothers, no matter what, would want us all to be ridiculously happy.
Blessings and gratitude to all,
Hope. Peace. Joy. Love.
Allie
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Nan and Allie - this is the gel: https://shop.oxyfresh.com/products/super-relief-dental-gel. Under the dental products you can also find the toothpaste and the mouth rinse (my sister got the one that is not flavored - or maybe a little mint (but mostly just tastes like water).
Les - thank you for sharing your story. Infertility is a special and unique cross and although I did not struggle with it, I do have a few people close to me who have. I'm glad that you have faith, even though I know it's probably hard sometimes to keep that as well. God knows the desires of our hearts, at all times. So just know that I'm sending you a special prayer today and a virtual hug.
Kris
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Thanks Kris. ❤️
Allie - what you wrote was amazing. Thank you for sharing that.
Les - Sending you a special hug today. 🤗
And to all of the sisters - hope you are feeling well today
Nan
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Well, today was exciting. My hair started falling out about 4 this afternoon, or at least that was when I noticed it - Way earlier than I thought it would. Today’s only day 7! My scalp was itchy and sore, so I tugged a little and every time I did, some fell out, mostly on the top in the back My husband, bless him, got right on it and buzzed it off with the #4 clippers and now I’m rocking my new do. I found a cashmere knitted cap that I’d made last winter, which is now adorning my head to keep it warm. My kids think I look cute. It looks a little better than I thought it would. I was convinced I’d look more like a potato.
Hope you’re all doing well.
Xo
Nan
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Nan!
You look marvelous darling! I love it!
I am SO looking forward to when my hair grows back so i can try a short cut!
Allie
PS Happy Mother's Day!
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Thank you, Allie. You, too!
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Allie - I love what you wrote. Very special!
Nan - you can sure rock the GI Jane look. The itchy sore scalp is annoying but once the hairs that are coming out are gone, it'll feel better.
Happy Mother's Day to all mom's in the group. I miss my mom dearly but got to spend the day with my 20-year-old daughter. We went for a drive this afternoon to see Drake's new house from the road (we knew we wouldn't be invited in. LOL). He built a huge mansion in the posh Bridle Path area of Toronto. It was fun and then we swung by for a drive past my grandma's house where my mom grew up since it wasn't too far away -- totally different neighbourhood though.. Very special day.
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Rockin it Nan! I think it's cute too. Also, love the glasses!
Hope everyone had a good day and feeling well!
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Happy Mother's Day to all you wonderful ladies!! If you have furr babies your still a mom!!
Nan, your rocking the short hair, it looks really good on you!!
My head has been tender for a couple weeks though hair still there. Told by oncology nurse that with the combo I'm on it usually starts around 3-4 weeks after starting treatment, so maybe next week or the week after.
I hope everyone has a good week, minimal side effects, good treatments (if you have them this week), and keep up the fight to kick cancer's ass!!🥊🥊
~Katie💗
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Nan, you look beautiful!
This weekend has been pretty good in terms of chemo side effects. However, I’ve developed a fairly large seroma under my arm as a result of the sentinel node biopsy, so I’m going to make an appt with the doctor to have it drained. Has this happened to anyone else? If so, what was your experience getting it drained?
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Kris, thanks for the tip about the Oxyfresh gel. I have the toothpaste but didn't know about the gel. I just ordered it on Amazon and it should arrive on Wednesday. Which will be timely since I'm going back for Round 2 today. My mouth got pretty sore last time, I could barely stand to brush my teeth. I also bought an extra soft toothbrush I'm going to use if I need it this time.
Les, sending you a hug. There is so much in life we don't understand. Maybe it will all make sense in the next life.
Allie, thanks for sharing your beautiful thoughts.
Nan, you look adorable and I love your glasses!
Now off for Round 2!
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Les- I don't know if this helps because our surgeries are different but I had a seroma after my mastectomy and sentinel node biopsy. I was still numb from surgery so I didn't feel anything. They just stick a needle in there and draw out the fluid. It was quick and easy. Glad you're feeling good!
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j: In answer to your question about the order of treatment: My oncologist said that neoadjuvant chemo was helpful for me because I do have a large tumor (>10cm) that they are hoping can be shrunk before surgery. So my plan is 5 months of chemo, surgery, then radiation (then probably reconstruction surgery). I specifically asked her (my MO) about whether or not the treatment decision was affected by Coronavirus or anything else, and she said no. However, she did tell me that the order of my chemo meds is helpful because of Coronavirus: I'm doing the AC-T regimen, which is very common, but usually the AC is done first. Instead, I'm doing the T (Taxol) first, which is not only milder in terms of side effects, but is also not likely to drop the white blood cell count dramatically, so that I can hopefully keep my immune system as strong as possible during the peak of the virus in my area (which pretty much happened last month, though I suppose no one knows if it will peak again).
Sherri: Aww, I love that bowling pin rock! What a great message in a fun way! Thanks for sharing! Also, I laughed about you guys going to check out Drake's house, haha
Nan: Hey, you really do look cute with that haircut! Your kids are right!
Cool to hear that you've actually been feeling ok. That's the weirdness of chemo—you're sorta just fine (until you're not), and sometimes we go crazy watching & waiting for any side effects, and other times we forget about it and just bump along with our regular lives. Hang in there, friend!Les: I just want to let you know that I read your story about children and feel for you, along with you. I apologize for the comparisons when my story is very different in that I (and my partner) had decided to not have children. But even though I had felt confident in that decision, it was another thing altogether when the doctor told me that I *wouldn't* be able to have children due to the chemo triggering menopause early (for me, not saying this is true for everyone). Thinking I had a choice and a decision was wholly different from being told I can't. I had to take a bit to process those emotions and grieve a little for the family that never will happen.
Sending energy and strength to all of us this week! love, jess
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Thank you all for the kind word in relation to “my story.” This cancer has made me realize that we have to speak our truths and support one another during difficult times with no shame or judgment.
Kelly, I got an ultrasound today on the seroma and it’s not large enough to aspirate. But, my doctor is prescribing some meds to help with the pain. Hoping for a good night of rest.
Hang in there, everyone! We’ve got this!! Praying for everyone daily!
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Good morning everyone!
I've been absent since my first post and apologize. I've been reading threads intermittently along the way and I'm sorry I won't be able to respond personally to everyone. However, please know I'm virtually supporting and cheering on each and every one of you as you go through your treatments.
I had Chemo #1 April 22nd and #2 is scheduled for tomorrow. No serious adverse effects the first time around...although I think I got mild inflammation of my vein where the catheter delivered the drugs (TC). My arm/vein was bruised and red for about 2 weeks and it is still slightly discolored a light brown. My MO said to mention it to the nurses tomorrow when I go in for treatment #2. Hopefully they can still find good venous access on that arm! I definitely did not feel well day 3-8, but it wasn't quite as bad as I was anticipating. The roving bone pain/aches plus the feeling like my mouth was continuously burnt were the most annoying :-) They all cleared up though and I had about 10 or more days of feeling almost normal, except for fatigue. I'm still napping at least an hour everyday!
I've lost about 80% of my hair. I shaved in steps. First, just the right half. Then, everything but my bangs. Now its a patchy and pie-bald mix of 1 cm hair and bald spots!!! Not attractive :-) But - I have lots of scarves, hats and a wig which help a lot to make me feel better and more normal. The brighter days and sunshine are helping a lot and I'm trying to walk 2x per day with the dog and anyone in my family who will join me!
Stay strong when you can, keep your head up and your feet moving. Cry and sleep when you need to. Sending you all comforting and healing vibes!
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Mudstick!
Good to hear from you and get your update and well wishes. I am glad your course is better than you expected.
What you describe, re: hair, is about my situation too. I have evenly distributed strands of hair on my mostly bald head that are stubbornly hanging on is the way I see it. I think it is a riot that I actually have to blow dry them if I have to rush off to a clinic appointment as I've had to do this week on a few occasions already.
I too will be going in for my next chemo session this week, assuming I pass the "pre-flight check"!
Best wishes to you.
Allie
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Mudstick: Yay, glad to know you're doing ok! Having 10+ somewhat-normal days is really great. It's also cool that you're able to walk 2x/day... hearing some of you talk about this is giving me the good kind of peer pressure to realize I can do better about getting exercise. About the IV bruising-- it might not be inflammation, it might have been that there was some leakage under the skin when the needle was taken out. Wishing you a good 2nd treatment tomorrow! We'll be thinking of you and sending positive vibes!
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Nan! You look ADORABLE! Even though I buzzed mine, it's still coming out - but not every day. I'll have 3 or 4 days where I really don't lose any and then a day where it seems like still more is coming out. It's very sparse now, but I still have coverage. We'll see if I actually go completely bald or not.
Kris
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Morning all,
Tomorrow will be my third appearance on "Cancer, Ain't It a Hoot?"...(chemo...)
My urinary tract issues are being worked on still but so far nothing has been found to explain the bleeding. I know the oncologist wants to continue me on the same regimen.
My nose is now acting up and it is dry and bleeds. My labwork is fine as far as i know. I have had trouble before when it is cold and dry and the heat comes on..but not as prominently. Have tried saline nasal sprays and will do some steaming today...
Odd thing is that i feel quite good otherwise...
.(Sighs heavily and exits stage right wth shoulders slumped. Head down...)
Blessings to all...
Allie
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Hello everyone,
Thank you all for your kind words about my buzz cut. You guys are awesome! I’m feeling a bit less self-conscious about it now. One of the only good things about quarantine is that I can take it slow, exposing new stuff like this. No double takes at the post office. No looks of horror from my neighbors. No gasps of consternation from the peanut gallery. Just a nice one-on-one discussion with my mother about the new do, or a neighbor here or there while I’m out walking - although most of the time I have my handy-dandy hospital cap with the buttons for my mask straps on, so they can’t see a thing 👍
Sorry about being MIA for the past few days. Not for bad reasons. In fact, mostly for good ones. I’ve been feeling pretty good since day 6 except for the amazing shooting pains in my hips and pelvis one afternoon and a little trouble sleeping a couple of nights. Tylenol to the rescue. I was expecting this week to have some ups and downs, but so far it’s been mostly ups. I’m so grateful for every hour that nothing is wonky that I’ve been afraid to say anything for fear of jinxing it. I still have almost two weeks until the next infusion (it’s the day after Memorial Day, so it got bumped back a day to accommodate the holiday. Lucky me ☺️)
Allie - I’m so sorry your UT thing is still bothering you. I hope they figure out something quickly. Bad enough to have nausea and feel as though you’re 100 years old, but that is really too much! Maybe try some unsweetened cranberry juice from Trader Joe’s? It’s bitter but if you put it in your water, you might actually develop a taste for it. Supposed to be great for the UT. And have you tried putting Vaseline or Eucerin on a q-tip and rubbing some of that up your nose? If it’s dry and bleeding, it might help. The salt might be drying it out. I hope your treatment tomorrow goes well. I’ll be thinking of you.
Mudstick - hope today went well. I’m following after you, so watching to see if the second one is the same or worse than the first. Hopefully, it’s better, right? Naps are good. I think drinking tons of water also helps flush all of that stuff out quickly. And walking - absolute must. Thinking of you, too.
Oh yes, and for a little laugh because who couldn’t use one of those - yesterday, after having great success with shaving my head, my husband and I decided that we should shave the dog, too. She’s about a month overdue for her grooming appointment, and honestly, she was having trouble seeing through all of the hair in front of her eyes. Soooooo.... last night after he got home from work, we caught her (she was hiding under the couch, do they have a sixth sense or what?) and placed her on an old hairdressers cape on the kitchen counter and got going. At first, she was too shocked to do much other than shiver. My husband, encouraged by that submissive behavior, decided to give it a go. She nipped him. He gave me back the clippers. After about 15 minutes, the deed was done, we gave her a bath, she rolled all over the living room carpet doing her Snoopy dance, and voila! Dog groomed. I still have to trim a few places on her face that we missed. But all in all, I was pretty happy with how well it worked out. So - Woman and Dog - the Covid Hair Saga, Episode 1. Just hope the quarantine doesn’t last too much longer. I think next time, she’ll catch on a lot faster and probably nip me, too.
Hugs to all,
Nan
PS - the glasses came from Peepers.com. They have a lot of fun colors
PPS - I think my hair is shorter than the dog’s
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Nan...love the buzz cut!🤩
Allie....hope all goes well for your “third appearance on "Cancer, Ain't It a Hoot?“🥰. My nose has had some light bleeding/spotting....I just think ALL the mucosal lined areas of our bodies get super dried out and so there is a little spotting. Glad you are feeling quite good otherwise.💗
Jess...I love a couple of the things you wrote in your latest post...”That's the weirdness of chemo—you're sorta just fine (until you're not), and sometimes we go crazy watching & waiting for any side effects, and other times we forget about it and just bump along with our regular lives.“....this is soooo true of me....moments when this is all I think and read about and moments when I completely forget!🤪And, “Thinking I had a choice and a decision was wholly different from being told I can't. I had to take a bit to process those emotions and grieve a little for the.....” I think this is applicable to a lot of what is going on for all of us in perhaps different ways....feeling we had made a choice or a decision about “X”, but now being told “Nope, I don’t think so”...it does require a grieving process to be able to move forward in whatever the area is that is being shut down. This whole journey is one big letting go, after letting go, after letting go; however, at some point I have to believe we will also be able to see the things we have gained....new perspectives, new friends (hello, I am looking at all of you!), etc. This is definitely not the path any one of us would have chosen, yet here we are and I see a TON of my friends here doing their best to keep on keeping on. Some of those days are harder than others, some days our best is staying in bed to rest all day, but we will keep moving forward.💗
Love to all....Erin
PS....Tonight is my night to FINALLY to do the big cut/buzz! I had put off washing my hair again for as long as I could and I knew that when I did wash it, a lot would come out....well I washed it last night and it did! YIKES! It is about 90% gone on top and 60-70% gone on the rest. I probably draggedthis out too long, but oh well...it is coming off tonight and then we are going out for ice cream!0 -
Nan - good on you for doing the dog groom. My Bichon-Poodle is so overgrown and ratty and desperately needs to be groomed. We are going to attempt to clip a bit around his face but we don't have clippers to do his body. Our next-door-neighbour helped but his nails last week since she had the tool and knew how to use it. The struggle is real.
Allie - good luck with tomorrow's chemo. I'm right behind you on Friday.
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I want this this shirt and thought some of you might as well....I am a little leery about ordering from an unknown company....anyone know where else to look for this?
Erin
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Erin - that shirt is great! My daughter is having a friends-inspired shirt made for me that says “The one where my breasts tried to kill me." I'm planning to wear it to my final chemo in June when I ring the bell.
While she was looking online, she found this. It made us chuckle. Sad but true. LOL
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OMG - all of those shirts (and Sherri’s friend’s inspired one, too) are perfect! I want them all!
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OMG Sherri, I laughed out loud at "The One Where My Breasts Tried to Kill Me"! hahahaha! I also love the pandemic one that Erin posted! It's so fun when we can have fun with our situation!
Nan: I also laughed at your cute dog grooming story! Thanks for sharing : )
Erin: Thanks so much for your reflective thoughts on one of my posts. I like to process stuff and having you all process with me is very therapeutic and comforting. I especially love how honest we all are about the good and the bad... and the weird, haha
Allie: Ugh I'm so sorry you're still dealing with the UT issue. My nose also bleeds and I know it's just a lot of dryness in my whole body, despite the irony that I'm drinking more fluids than ever. I just think chemo is killing, squeezing and vaporizing every cell in my body and so I accept the dryness as a temporary state, looking forward to when I start to refill, regrow, and re-plump back to a healthy new me. Also, love the humor in your cancer episode saga!
Happy Wednesday to all! love, jess
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Hi Nan, and all...
Loved your update and photo Nan. You both look terrific!
Thank you for suggestion re: nose. NP suggested same thing. I have no vaseline, q-tips. I may try to get some olive oil in the passages somehow. Will just try to use as much saline spray as I can tonight.
My UT tests are all done now and everything is normal so the thinking is that some cytoxan had irritated the bladder. I'm drinking like a fish. One thing to do that occurs to me is not drink caffeinated coffee anymore. I just had a little bit this a.m. and I spent the entire morning peeing.
So given all this, I've been cleared for take off and I'll be showing up for chemo tomorrow.
BLESSINGS AND BEST WISHES!
Allie
PS Thank God for good nurses, medical assistants...they seem to have the time to talk and get me out of orbit. But you have to love the oncologists who manage this horribly complicated business on which lives depend. It's scary, but I have to trust their genius.
PSS Thank you Jess...my very best to you
PSSS: oh my gosh...reading all the other posts now! The tee shirts...what a riot!!!!! Love what everyone has to say. Such a remarkable group.
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So, we FINALLY did it! I was ready and not ready, but I am grateful now to have done it. Erin
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Erin — Adorable!!! Thanks for including us with photos of your hair journey. You look terrific.
🌈
j
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Erin, you look great! Same smile, same glow, just beautiful! And that scarf wrap also looks so good
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