Starting Chemo April 2020
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Morning ladies!
Heading into TC infusion #2 this morning. Thought I'd share a fun time-lapsed vid and pic of shaving off what was left of my hair. I've been busy working/homeschooling and so just lurking lately, but I cannot wait to hop back in soon with a 2nd post commenting on everyone's triumphs and struggles these past few weeks. Know that you're all always on my mind and in my thoughts. Sending good vibes to all for whatever this next week may bring.
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Kris,
Bless you for the pep talk. I very much appreciate it!
Congratulations on the halfway mark tomorrow! Here's to a good session and lovely weekend!
Allie
Ps i have a view i cherish of a large marsh and if i were smart i would bring binoculars to look for birds such as blue herons...
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Kris - hope your infusion is going well. Thinking of you.
Vilija - Good luck tomorrow. Your video and pictures are a hoot. You look great with your new buzz
Mine’s getting thin now. But I still have some hair. My next chemo is on Tuesday, so that’ll probably take care of most of the rest. Oh well ... It’s rather fascinating, in a morbid sort of way, to see all of the hair on the lint roller every time I run it over my head. BTW- it feels great to run that thing over my head when it’s itching.Allie - walking outside can be the best thing for raising your spirits. And it’s the safest place to interact with other people as long as you’re social distancing and everyone is wearing a mask. Even just nodding at other humans can be uplifting. I wear a Fitbit and Debra started a challenge, which keeps me moving even when I’m feeling lazy. I log about 12-16K steps a day other than the couple of days after chemo when my legs felt like lead. But even those day, and in the rain, I go out. I think it really helps cut down on the SEs of chemo and helps to keep my head clear. Maybe you can find a spot somewhere in your town that is quiet without a lot of people, perhaps early in the morning?, to go. You could drive there if it’s not close to your house. If you have a book on your iPhone or some good music, it can make the walk even more enjoyable if you’re trying not to get too much in your own head. (I find that the inside of my head can be a spooky place sometimes.) Anyway, I hope you’re feeling okay.
Heather - your view is lovely. My chair faces into the cancer center so all I can see if a bunch of people getting chemo. I brought my iPad last time and did a Zoom meeting with my knitting group, which killed an hour, and then I read a book. It’s too bad they don’t face us out the window because the hospital is right on Lewis Bay and the steamship ferry to and from Nantucket goes in and out all day from there (although, it might not be going all that often right now, come to think of it). Maybe I can get them to swing me around next time.
Hope you all have a safe and easy holiday weekend without SEs. Sending lots of hugs and happy thoughts.
Xoxo
Nan
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Nan,
Your update is lovely. I love reading your thoughts.
Allie
PS. Exercised indoors ("dancercize") and then sat outside in warm sun and read while a cheeky little House Wren harrassed me...
I am surprised I like the "dancercize' as much as I do. I make it all up. Just tune into a "party mix" station and have at it!
A.
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Kris, Best of Luck to you tomorrow. Half way done is going to feel great !! I'll be thinking of you
That will be next Wednesday for me too and I know how much I'm looking forward to it.Vilija , love the video. My son did a video as well and I love having it as a keepsake. You look great !! I got the CryoMax Cold Pack from Amazon for icing my hands. It's in the freezer ready to go for next Wednesday. It looks like it is going to be just the ticket for my fingertips. I have the socks already with the gel inserts. My next treatment I will be at the half way point too
) Good luck with yours tomorrow.Heather, you've got such a great view!! I'm jealous. You are at #8 already. You're getting it done, one at a time
I hope you're feeling well and you enjoy the Memorial Day Weekend . Allie, I agree with Nan and Kris. I have walked almost every day since I started this Chemo. Even the day after the Neulasta Shot when I can barely get in a short walk .... I do feel it has minimalized my symptoms. It has help put my mind set in a positive place too. I wear a baseball cap and a mask even in my neighborhood. Headphones in usually listening to a Podcast or just my music playlists. I was really worried at first too thinking I was so vulnerable going through treatment. But I am careful and wearing the mask makes me feel protected even with all the pollen out this time of year. If I see someone coming towards me in the neighborhood I cross the street. Being outside is so therapeutic. Nan has put in over 60,000 steps this week. We are doing the workweek hustle and she is in 1st place !! You Go Nan !! Even after the double Mastectomy she is putting in 60,000 steps all while doing Chemo. You are such an inspiration to me !! Any other FitBit users out there ??
Debra xoxo
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Hi everyone,
Over from the May group and so appreciate being able to read this thread to learn about everyone's experiences so I can be as prepared as possible! Had my first TC chemo on May 7th and going for my 2nd on May 28th. Anyway, Vilija, thanks so much for sharing your recent haircut video. My hair is clearly hanging on by a thread (haven't even cut it short yet!) so need to cut/buzz it in the next day or two and your video really helped me. Your positivity under a difficult circumstance is inspiring and shines through
Thank you everyone!
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Vilija - love the buzz! You look adorable! Good luck today - I'll be with you in solidarity.
Debra - Yay for halfway! I'll be doing the happy dance in celebration of that this afternoon for me, and for you next week. It's a good feeling.
Allie - I love that you're dancing! And nothing I like more than sitting outside on the screen porch and reading. The fresh air feels good.
Nan - definitely ask for a window view! Especially since it's right there! So interesting - all the chairs in my infusion center (even the ones that are more in the middle of the room, face towards the windows. Way better than looking around the room!
Kris
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Vilija: Love the look and your video. I am enjoying the buzz cut, what's left of it anyway. My hair is pretty patchy at this point. I may stick with short hair once I am done with chemo.
Nan: I love my lint roller! I've already gone through 2 and had my husband pick up 2 more for me. It is wild to see all the hair coming out.
Heather: Your view is amazing! I get to look at 4 walls so I usually bring my laptop and watch netflix. My husband and I were just talking about how we need to get back to the mountains. I really feel like I need a break and to just escape for a bit.
Exercise has been my saving grace. I feel so much better when I do it. When I started chemo I was walking every day. Over the last few weeks I've bumped it up to a jogging walking combo. I walk for 2 minutes and run for 1 for about 30 minutes. It's amazing how good I feel after. I am hoping to keep it up through all my treatments as I can tolerate it. Going in for infusion #7 this after noon. Next week will be the half way point for me!
Has anyone considered traveling? I really need to escape reality for a bit. My husband and I talked about renting a small RV and going camping or renting a house on a lake or beach. We are trying to come up with ideas for ways we can safely travel and avoid people just to escape the day to day monotony. Our little man (4) has been acting out. He is an only child and hasn't seen his friends since early March. Maybe a change of scenery will do us all some good.
Hope everyone is well.
Stay strong!
Lise
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HI all,
Just catching up on all the posts here. I have been feeling very good, so posting less. I am on day 16 after round 1, and my next infusion is day 22. TC.
I love the FitBit walking connection. I use Apple watch for walking, so I don't think it is compatible. But that would be fun to join you all. I am walking 2 miles each day. Today I will add a little more to that. I had 3 days during week post treatment that I did easy yoga instead. Going outside was too scary. Mostly because I was having diarrhea and was nervous of getting too far from the bathroom.
Even though I am cold capping, yesterday lots of hair started falling out. I don't know if it is working. They say I still could lose quite a bit of hair. But it was pretty dramatic yesterday. Maybe I will join you all after all with a bald head.
Have a good day all.
XO
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Suzy - I'm also on Apple watch (lost my Fitbit charger). It would be awesome if there's a way to do an Apple walk challenge. Anybody know if this is possible?
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Hair notes:
"Dramatic" is the word...
Mine started falling precipitously a couple of days after session two of AC. I have chemo every two weeks so that would have been a month in.
Based on the rate of fall, I estimated it would take about one week for it to completely fall out and my estimate was not too far off.
Because I have no clippers, I elected to let it fall out "au naturel," with some help from me.
My procedure was this:
Before showering I would have a "pull session" where I merely ran my fingers through my hair like a comb and the hair just came away and became stuck on my hand. I would periodically pull it off the hand and put it in a big pile. I made several big piles during this process and realize that when and if my hair grows back, I should never complain about thinning post menopausal hair again!
When I had "done enough" pulling, I would shower and wash my hair, trying to hold onto the ends so not too much would fall out in the shower and clog up the drain. This approach worked in not too much getting into the drain itself but I usually had to clean up the shower after.
My hair stopped coming out after about one and one-half weeks and I am now left with hair still all over my scalp but it is only strands and you can fully see my scalp. I would probably "look" better without the sad strands but I don't want to try to cut the strands down further.
None of this has been painful physically. I had brief itching the day before the hair started to fall but that is it.
Since then, my head can get cold and I will sometimes wear a cap if so. I am going out in the sun shortly and so it is a good idea to wear a cap to protect against sunburn.
The funny thing is that I still feel like I have hair and will catch myself trying to gather it or brush it aside, etc.
If I have to go out for an appointment, I still blow dry it because I'm in a hurry! This really amuses me.
I SO look forward to it growing back but I look forward now to being able to try a short hair style such as a pixie!
My hair was VERY long (down to the waist) before I cut it up to my collar bones in anticipation of loss.
Allie
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I don't have a FitBit or the Apple equivalent. So I will have to do this low tech for now. I think the suggestion made to me to find a quiet place in town to walk would be a good idea. I am going to have a teleconference with my general practitioner on Tuesday and I am looking forward to it. He is an excellent cheerleader, knows me, and knows the area.
Allie
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Hello my fellow Valiant Warrior Princesses!
Vilija...love the video and your buzz cut photo! Looking STRONG and FIERCE!
I concur with everyone on getting activity in on most days..,,I have been leaking in the neighborhood 2-3 miles. This week I am going to add in some yoga...,it’s been over six weeks since I got my port, so I am thinking I should be able to put weight on my arms like I different yoga poses, right?? Anyone?
Water is also key! Go ahead, chug that water right now! 💦
Kris... am joining you today for Chemo Day #3 TCHP.....praying all goes well for you! I am on my last med! Yay! I am sitting by myself off in a corner, so I have taken my mask off!
Hope everyone is feeling well and if you are having a down day, I pray it will be short lived and you will be feeling well soon!💗 Erin
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Erin,
You look great. Inspiring. I usually end up looking like I'm going to rob a bank or break out in a rap song when I arrive at the cancer center (stretchy cap, bandanna mask, oversize button down shirt, no make up combo...). I'm comfortable at least and the oversize shirt helps my chemo nurse get at the port easily. But still...
Speaking of ports...I'd follow advice of med team. For me, I initially had some soreness when I would work too hard (cleaning things) or when I was exercising. I asked my onco NP about this she said just to play it by ear and be gentler if I run into trouble. I don't think I notice too much any more but then again, I'm not testing my left arm use as much as I could I suppose (my port is on the left). I'm sure I could do my little arm weights if I wanted to as long as I didn't go overboard (lots of intense heavy lifting overhead, etc.). I don't plan on increasing intensity because I'm not sure how that would affect the port...
Allie
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Hi Erin
Look at you! So excited for you that this is your last med. You are sincerely a Valiant Warrior Princess 👸 👑 Congratulations! I haven’t been extra careful about my port - been weaving and warping my looms, the biggest one is huge, the size of a kids playhouse, so climbing in and out of it, getting up and down off the floor, and cranking on the warp is similar to doing yoga. Weaving is really physical. The port is still where it’s supposed to be and other than making a big bump on my chest near my collarbone, it doesn’t bother me and it’s still doing fine. I don’t think yoga will bother yours. Just add things slowly and if it starts to hurt, stop.
Nan
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Nan,
I LOVE the loom!
Allie
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Nan- that is really cool! What all do you make with it??
Erin- my post-op instructions after getting the port said new gentle with it for 2 weeks, and no core exercises for 6 weeks. Other then that our was good to go. Your picture is beautiful!!
I hope everyone is doing good and having minimal side effects!!
Have a great weekend and keep up the fight to kick cancer's ass!!🥊🥊
~Katie💗
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Thanks friends, for your thoughts on the port and yoga...I guess I could just go open my binder and look at the discharge teaching sheets!🤪🤦🏼♀️
Nan......LOvE the loom! How cool! Yes, please tell us all of the cool things you make on this! Is this how you made the sweater you posted awhile back? Oh, and to clarify...I was on my last med of the day...not last med ever! I just completed my 3rd of 6 TCHP Chemo days which are every three weeks, so I won’t be done with chemo until July 24th...but I am halfway down!⭐️⭐️⭐️
Allie....I am typically a make up girl, so I am keeping that up when I go out. It helps me to feel a little more like me. I was sitting off by myself in a corner facing some windows, so I took my mask off while I was sitting there and no one was around me.😉
guess I better get to sleep! Erin
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Erin - you look gorgeous! Hope it went well - my infusions have been really smooth so far. No issues or reactions. My center also lets me take my mask off when I'm in the chair, and even if I'm walking around to go to the bathroom or asking them to warm up some broth for me. They are not strict because the staff is all masked and no patients are near each other. It's really nice. My surgeon told me I could do most any exercises with the port, but advised against doing anything with repetitive arm motion on that side (like overhand tennis serves) and avoiding yoga poses like downward dog - anything upside down that puts upward pressure on the area. You can do a vinyasa, since you don't stay in it. Anyway - that's what I was told. I'm mostly walking every day and I agree with everyone else - even on the really bad fatigue days the week after, that is the one thing that makes me feel better for a few hours. And it's cycling that chemo OUT!
Kris
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Erin - I had my port put in 6 weeks ago and last week I was able to do some pretty heavy bench press with no pain. I think some yoga poses would be ok, just suggest you take it slow and listen to your body
Feels good to be able to do some of the I did before my diagnosis.
Namaste
Lise
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I’m loving everyone’s beautiful pictures!! Sorry I don’t check in regularly, but hopefully can more often now. I’m at home, been out of the hospital for a week (thank goodness!). Nothing about the ordeal was pleasant, so we’ll leave it in the past. I can finally breathe a bit better. I do have still have a small pleural effusion on the right lung, though they drained a good portion of it. It causes some pain, but it’s tolerable. I did get my third round of AC on Tuesday, despite being seriously anemic. It went well. But today is day 5 and it’s always a rough one. I always seem to feel achey, sore throat, upset stomach, and cranky. I’m pretty sure it’s the Neulasta, and I know it will pass, but it makes for a miserable day. Hopefully, I have one more round of AC and then a short break before starting Taxol.
My hair is still in the weird baby bird stage where it hasn’t completely fallen out yet. I mostly wear a bandanna out to appointments, but I’m going to check out our cancer center’s head covering shop at my check up on Tuesday. Mostly it doesn’t bother me, I do all my face timing and door answering without a cover.
I’m a little concerned because my husband has to have a huge hernia surgery on June 3rd. He’ll be in the hospital for a few days, and my parents are coming to stay with me. I’ll have chemo on the 2nd, so it will be the first time they are really around for side effects and he is not. I don’t want to worry or scare them.
Love to all.
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Stacey,
I am at same stage. One more AC and then onto Taxol.
How pleasant to be home. There"s no place like home...esp. when you've been in hospital. So glad parents can visit. Wish you, husband and parents well.
Allie
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Ah - the looms. Let's see, I make blankets, table runners, place mats, scarves and shawls, and lots of tea towels
I have three looms. The one in the picture is the biggest one. The other two are smaller and easier to warp. The big one is an all day thing so when I warp it, I put 10 yards on it and go for a couple of months making several things with the same warp. The sweaters are hand knit, not done on the loom. Right now I'm making some striped socks from some yarn I dyed. What a pain that process was. But the socks looks good. I may have to make some more at some point just because. And who am I kidding? I don't go anywhere, so I have tons of time for this stuff. I'll post some pictures of the stuff I made with the looms lately (and the socks which are under construction. Thanks for asking. Xoxo Nan (PS - I named the yarn “Sexy Lifeguard."
Shawl from Alpaca/Merino Boucle (woven)
Tea Towels (woven)
Table Runner (woven)
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Stacey — good to hear from you and things are on an upswing. 🙏 for you, DH, and your folks. I did my first full chemo regimen this week which included Taxol. After what you're been through with AC, hope it goes smoothly for you.
🌈
j
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Nan- the shawl and table runner are beautiful!! Wow you have a wonderful talent!! There tea towels are very nice also!!
Stacey- yay about being home!! I hope your last AC goes well with little SE's. I had a 2 week break between AC and starting the Taxol. Have you talked to your parents about how the treatments affect you? If not maybe give them some info so you don't worry or scare them. That way you can let them know ahead of time what you do to help and what you might need from them during that time. It is wonderful that they will be there to help you!! I hope your husbands surgery goes well and his recovery is quick and successful!!
Allie- yay only 1 more AC to go!! For me AC was the worst and the Taxol was quite a bit easier! I thankfully didn't have the weird taste and issues with food anymore. That could have been from the pre-run meds, who knows, all I know is it was a lot easier!!
I hope you ladies are having a good Memorial day weekend staying safe!! Keep up the fight to kick cancer's ass!!🥊🥊
~Katie💗
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Katie,
Thank you and bless you for your words. I am now starting to have some annoying SEs ( side effects) that need better management in my opinion and will be talking about them to team this week before chemo to see what more could be done. Having some finger and sole discomfort now and the nose issues continue.
So i am very glad to hear you think Taxol was "easier."!
Easier is a relative term in this game....we are all so different, our pictures are so different...we all tolerate different things so differently...
I try to keep in mind that problems can be mutifactoral, that patience truly is a virtue, time can change everything, and that sometimes change can be right around the corner.
And then there is all the good in this world to be savored right here, right now...the birds are singing away outside my window and i have a nice cup of coffee to enjoy with a new book. The cat has finished his breakfast and will be up to nap next to me in the sunshine soon.
My fond blessings to you and to all...
Allie
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Stacey - so glad you are home! My husband is also looking at a procedure, but first needs an MRI, which was cancelled when all this hit. So we're trying to get all that figured out. Glad your parents can some and stay with you.
Nan - WOW! Gorgeous stuff you make. Such talent.
Allie - I'm on the first week of Round 3 (different meds from you) and I have kept detailed notes about the first 2 rounds and the daily symptoms. I'm implementing some preemptive strategies this time around for a couple things, so we'll see if that helps. Specifically, I have had bad acid reflux and the same really dry nasal passages that you have had. So I started with saline and coconut oil from day one and I'm also taking some Pepcid first thing in the morning for the acid. I started to feel it creeping in last night, and tomorrow would be the day that it kicked in the worst last time, so I'm hoping the pre-dosing will keep it at bay. We shall see.
Kicking cancer to the curb!
Kris
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Kris,
Your words are like water to a thirsty plant!
I read about the coconut oil! That stuff heals everything and it smells SO GOOD! My gynecologist first recommended it to me a while ago! I am going to look into this again. My favorite body wash (which I cannot find now for some reason) is Tom's of Maine Creamy Coconut Body Wash...It smells wonderful. A very gentle, pleasant "non-scent" almost. I love it but cannot find it now.
I wish I had thought about coconut oil for the nose before I went out and bought a bunch of stuff for it! My NP recommended simple things such as vaseline and also my chemo nurse gave me Aquaphor. I tried the Aquaphor and became impatient after one day and bought a moisturizer you can spray into the nostrils and also a dedicated gel to insert into the nose. I thought spraying a nasal moisturizer is better because it reaches higher up into the nostrils...
My "nasal regimen" currently is:
1. Rinse the nose with saline spray before step 2 below.
2. Squirt the nasal moisturizer in. (The package says try to keep it to no more than two, three times per day). There is no decongestant in it.
3. Run a vaporizer at night.
4. Use some Hall's lozenges during the night as needed to bring down the congestion that seems to happen during the night for some reason.
What the above seems to have done is lessen the bleeding (I am uncomfortably not blowing my nose because chemo nurse said that could make things worse...) and I do not have the soreness up in my passages. So that's good. But, I still have blood tinged stuff and a lot of congestion at night for some reason and runny nose with post nasal drip and sneezing. Right now as I am typing this I feel better and so maybe things will move in the right direction and I should be more patient...a "patient patient"!!!
I am considering going on Claritin everyday now to see if that will help congestion. I take Claritin starting the day of chemo for a few days to offset the discomfort Neulasta can cause. I am wondering what this all means and I wonder if this is not just all the chemo but maybe chemo plus allergens, which I've not had trouble before...I wonder if being on chemo has some how lowered my tolerance to allergens? Who knows? Maybe I'm most likely overthinking and worrying too much...
About the heartburn: You are so smart. I found that the heartburn actually caused me to feel QUEASY. When I told one of the NPs at the clinic that, she wrote a script immediate for Prilosec. I normally dislike taking anything more than I have to but in this case, I made the exception because you really have to do what you have to in order to maintain a healthy appetite and ability to eat healthfully!
Allie - a girl who wished she knew more about her nose...and a lot of other stuff...
PS: Love your sign off line: Kick cancer to the curb! It's a good visual!
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Kris, Allie and anyone else with nasal issues- Remember you don't just lose your hair on the top of your head, you loose your hair everywhere on your body, including noise hairs! You no longer have the hairs to keep out allergens and other particles. Your nose is vulnerable now to. Talk with your MO's about seasonal allergy issues and such.
I hope you all have a great day and stay safe!! Keep up the fight to kick cancer's ass!!🥊🥊
~Katie💗
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Katie!
Yes! I read that about the nose hairs!
I haven't seen any coming out but that does not mean they did not. Who would really be looking for that?!?
What a riot! The things I've learned about things in this journey...
Your linking of the nose hairs to allergen protection makes great sense! Connects the dots I had...
Oh for sure...the team is going to get an earful from me this coming week!!! I'm going to fight to get through this because it dawns on me that if I am having side effects, the chemo is likely, as you say, kicking the cancer in the behind! I was also thinking just now that my body is in the fight too and I am thankful and should do what it takes to help it.
The med team will be doing their assessments this week to make sure I am fit for chemo and I know they will do all they can to make sure I'm in good shape and help me feel just a little better.
Thank you Katie.
Allie
The nose knows...
BTW: I have signed up to take a yoga class online and am very excited about this if only for the reason that I now have something "scheduled" to do.
I think I need to come up with more activities to schedule. Especially since I have not been cleared for work. I did not anticipate what a hole not working would leave in my life...I need a schedule...direction...purpose...
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