Starting Chemo April 2020
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Nan- I love the picture of you and your dog!!
Erin- you look fantastic!!
To everyone, sorry chemo brain don't remember all who have buzzed the hair, you all are rocking the short hair!! I totally understand that it's not something you wanted to do!! Remember, chemo did not take your hair, YOU did, chemo is slowing it coming back!!
I hope whoever has chemo this week your sessions go good without any hiccups/ issues!! I hope everyone has a great week with minimal side effects and keep up the fight to kick cancer's ass!🥊🥊
~Katie💗
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Katie,
Thank you for your best wishes yo the group.
I send mine to you, and to all our sisters.
Allie
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Erin - you look great. I really love the way you've tied the scarf. The twist at the top give it a nice look. If I could tie scarves like this, I'd wear them instead of a wig.
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Hi All,
Sorry I have been MIA for a while. You ladies have been busy!
For those that have recently buzzed the hair; I was given a suggestion to get a lint roller for my head. It sounds strange but it feels so good to get all those loose hairs just sitting there.
After tomorrow's taxol infusion I am 1/2 way done with taxol! After that I start AC which I am pretty nervous about because I hear the side effects are much harder and long lasting than with taxol. I've been reading that vigorous exercise helps with the side effects so I have moved from walking to a walking/jogging combo. It actually feels really good to be able to move my body and break a sweat. My husband has also been helping me set up a weight lifting routine in his home gym. I am hoping with strong muscles, the recovery process from surgery will be a bit easier. I was always in shape and worked out but gained almost 100 pounds when I was pregnant with my son and never truly tried to lose it after he was born. I am hoping cancer will be the catalyst to become more active and healthy again. I want to see my little guy start kindergarten next year, graduate from high school and college, get married and have has own children (if that's what he chooses).
Best of all, my infusion center is allowing 1 guest to come with me so my dad will be driving into town to come with me. This has been really hard on him. He already saw my mom battle breast cancer (and win) almost 20 years ago and now he has to see his daughter fight. I am hopeful that by seeing how well I am doing it will put him at ease.
I love the t-shirts! I order a lot of monogrammed and personalized shirts for my son from etsy. I am pretty sure you could find someone there that could make any shirt with any saying you want.
Stay strong ladies!!
Lise
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Hey beautiful ladies,
Sorry I have been MIA. My sister’s visit was awesome, got outside did some fishing, had some much needed fun. My MO postponed chemo that week because I was still dehydrated and exhausted, we discussed the CT results with the nodules in my lungs continuing to grow, and he set up a lung biopsy for last Tuesday. I was petrified. Everything was going well until I started coughing up blood. A blood vessel burst and leaked into my lung causing a pleural effusion and earning me a hospital stay. It was incredibly painful and scary. I got sent home last Wednesday on bed rest due to that, and the bone contusion (I guess a pesky rib was also in the way). I felt so bad for the radiologist, he was beside himself, but had explained beforehand this could happen, so I don’t blame him at all. I knew the risks. And, I know my body likes to be contrary.
Fast forward to Monday morning when I woke up in immense pain, unable to breath, and running a fever. Back to the hospital. After getting yet another Covid test, despite explaining it was most likely a complication from the biopsy, they put me on the plague floor again. So depressing. Strict isolation, and I waited half an hour for someone to help me to the bathroom (I had gotten to the side of the bed and determined I’d take myself when they arrived). CT scan showed a pleural effusion, but blood tests did not indicate infection. So, my pcp thought it was muscle spasm and nerve pain due to the trauma of the biopsy. And they were going to let me go home...then I spiked a fever again. Long story short...Covid was negative, so I got moved to the oncology ward, where I am now becoming a familiar face. I’ve been on IV antibiotics, muscle relaxers, Tylenol, and Toradol for the last few days. Chest X-rays continue to show fluid between the lung and chest wall, still spiking fevers, they still aren’t sure why. Today they called in a pulmonologist. He wants the fluid drained (yay for yet another needle in Stacey’s back 😱), is adding breathing treatments, and told me he’d see me tomorrow. I want to go home!! I can’t get comfortable to sleep, I haven’t been hungry, so I’m living on protein shakes, and I miss my hubby. (Okay, pity party over)
The worst part is they couldn’t give a definitive answer on the tissue they did manage to get from my biopsy, but my MO and new Pulmonologist agree it’s most likely Mets. And I haven’t had chemo in a month due to all of this. I’m anxious to get started again and get AC over with.
Good news- my SIL got his humanitarian reassignment and my daughter’s family will be moving to Scott AFB by St Louis the 5th of June. It’s only 3 hours away! This means my daughter and grandsons (8, 6, and nearly 5) will be joining us for the summer. I’m so excited!
Everyone’s hair looks great. I feel like a baby bird because it kind of stopped in the middle and I look silly. I wear a bandanna or beanie if I go out in the sun, or to the doctor, but at home I rock the baby bird fuzz.
Love to all.
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Erin - you look GORGEOUS! You have such a pretty face - and I love the scarf. You are rocking it!
Allie - I'm really struggling with the bloody nose too. It's SO dry. I'm using saline spray multiple times a day and then taking a q-tip and smearing coconut oil up in there before bed. That's helping. But everything is dry - my skin, my mouth, my nose. It's the worst, lingering thing I have so far. It does seem to get better as I get into Week 3, but then we start all over again. I asked the PA about it this week and she said what I'm doing is all I can do.
Lise - I also had the lint roller suggestion given to me and I second it! It's really great. When I notice more than a hair or two coming out again in the shower, I get out and let the buzz dry and then roll my head a couple times. It gets out all the loose hairs and stops the shedding. I'm finding that I have 1 or 2 days a week where more seems to come out an then it stops for a few days. So it's not every day. Hoping it stabilizes at some point.
Stacey - so sorry you're dealing with all of this! And prayers for quick healing from the latest complications so that you can go home. Such good news about your daughter and her family - I know you will love having them close to you.
Kris
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Erin: you are gorgeous. You look radiant. Go rock the scarves but you don't need to cover up!
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Stacey- I am so sorry you did not have a good experience, and continue to have a bad experience with your lung biopsy!! I coughed after mine and ended up with a small pleural infusion. I coughed after each specimen, 3 of them, was done and tasted blood after the 1st. I seriously hope that your fluid removal goes well without any complications!!💗 Could they possibly do another biopsy when they remove the fluid?? Thoughts and prayers are with you!!
I hope everyone else is doing good, treatments are going good with minimal side effects!!
Have a great day, stay safe, and keep up the fight to kick cancer's ass!!🥊🥊
~Katie💗
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Geez Louizeeez ... AuthorSpot Stacey ... you've been through the dumpster and back ... Bless your heart ... so grateful there was a bit of extra good in the last couple weeks with your sister's visit AND what great news your daughter and hubby and GrandChuckles will be closer. Thrilled they'll be there for summer. Thankful your favorite SIL requested reassignment and the USAF granted it. I only have one SIL so I tease him saying he's my favorite. You may have more than one SIL, so I'll just say all of them are your favorite if you do.
Cannot imagine how frightening it is to wait on “the plague floor" for your Cvirus test results — again. Your description puts a reality to it which helps we who haven't been through what you're going through understand better. Thankful test results were negative. Sending you prayers for continued strength to handle what you're going through. Not even close are you a “pity party," woman all you did was share facts. Hope you can find a comfortable position and get a few hours of good sleep tonight.
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j
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Just catching up on all the stories. Loved those of you rocking the hairdos and sending my love and prayers for all that have had experience this week❤️❤️
Well after many complications and several visits to the ER , I finally did my first infusion today. Was a nervous wreck because my port first developed a hematoma which delayed the treatment for a week. I was suppose to use that additional week to psych myself up and build courage to take the bull by the horn. Well as luck would have it , I developed a huge rash and my chest and neck 5 days after they placed the port ! I'm also getting night sweats but they can't seem to figure that one out.
The care team felt I could still go through with the treatment so decided to get started. I used this time to finally text friends and colleagues about my cancer. I felt it was time. I cried almost the entire session. I also gathered my family on Monday and broke the news. I know it's difficult for them especially the younger ones but I did tell them that they needed to remain strong because I needed to see them fighting this fight with me. Seeing sad and depressed would only bring more worry for me. I even showed the bowling pin picture sugar77 posted earlier in the chat. Gave them hope as well!
Headed home , which is a 5 hour drive and I’m already starting to feel nauseous 😭. Thought it would take a couple of days before side effects kicked in 😡
Claud
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bazcla Claud — very rough patch you're going through. Grateful you chose to go the to the big cancer center so you have a team. Sad you have a five hour trip home. Will be thinking of you and Stacey and hope you bothget some restful sleep tonight.
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j
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Hi all,
Just got caught up - wow a lot of things have happened in the past day or so. Erin, I love your new style! The haircut is so adorable, and your scarf is tres chic! I might have to spend hours in front of a mirror trying to replicate that sweet little bow.
Lise and Claud - hope you are feeling better after your chemo. LOTS of water! And sending good vibes that you'll be on the upswing quickly.
Stacey, you really got knocked flat, you poor thing! Having the biopsy go nuts like that, and then a few days later, getting sick and then being relegated to the plague floor waiting for a Covid test sent chills through me. Thank goodness it was negative. I hope you get well enough to go home soon! And congratulations on your family moving closer. It's a wonderful thing and having your grandchildren and daughter with you this summer sounds heavenly. Sending hugs 🤗
Allie - good luck tomorrow - thinking of you.
Na
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Claud & Stacey, I’m so sorry for the complications you guys are having. Please know that I am praying for you as well as everyone else in this group daily. You guys are ROCK STARS for hanging in there and enduring all that you’ve been through! You inspire me!
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Ladies...you sure know how to make a girl feel good! Thanks for all the baby bird head love!💗
Stacey....what a journey you have been on over the last two weeks! Praying you are in the home stretch and that will be home soon and feeling good! We live near Scott AFB!! Let me know if there is any way we can help your daughter and her family!
Claud....I am glad you were finally able to have first day of chemo, but sad that it was a hard day....sounds like this whole past week has been hard. 😢. Praying for a safe journey home and that you will rest well and have minimal side effects.💗
Erin0 -
STACEY...
I will keep you in heart and prayers!
Allie
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Kris...thank you for your words on nose issues. After chemo today i wenr to the cvs across the street and bought a vaporizer, qtips, more saline, vaseline, more aquaphor, lozenges, mouth rinse (The Happy Dentist), etc. Oh, and Paradontix toothpaste.
I just got up to use the bathroom, spray my nose and get more water and am reading all the posts. My vaporizer is quietly purring away in the corner making helpful steam.
Buzz cuts and lint rollers! We are turning into shedding cats!
Allie
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Lise..
Easy to say, but try not to worry about AC. I am on it and Cytoxan now. Get any clarity you need from your treatment team. It is chemo and is undoutably very rough on us. With our good onco ream, chemo nurses, excellent chemo support drugs you can get through this.
Allie
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Caud,
You are In my heart and prayers for things to settle down as quickly as possibe.
Allie
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Good Morning Ladies!
Everyone — you're in my prayers. Y'all leading the way and sharing your experiences really helps me prepare emotionally for Taxol.
I'm grateful the scheduling snafu pushed Taxol from yesterday to 5/19. Its taking longer than I thought to bounce back from Tuesday's dental work. I didn't expect so many stitches. Glad I was ready with lots of soft foods. Does anybody else like drinking warm Jello? My favorite is cherry.
I've been reading again the posts from the last several days. A journey for all it has been. Stacey and Claud — whew, y'all have hada rough time, hope some good, restful sleep. Erin and Katie — bloody noses ... y'all are our Rockys; keep up those fists. Lise — my eyes puddled ... how powerful it is for your Dad to go with you to chemo. Doesn't matter how old you are, Daddy wants to take care of his little girl.
Allie — confess I literally laughed out so loudly I woke up my dog. Your last sentence and then your name spoke to me ... we're all “Allie's cats!"
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j
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J you are a genius for the play on words! Allie's Cats! Brilliant!
Had no idea about the dental work! I must have missed that! Quick and easy recovery!!!
Allie
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I talked to the doctor and she thinks that the chemo (Abraxane) has improved my "lesions" enough that I may be able to switch to the pills (Ibrance) in June. I'll have a PET scan and three more chemos after today.
Also, I fell in January and fractured my pelvis and have been in a wheelchair ever since. The fracture has healed (no more pain) but I'm still too weak and wobbly to navigate with my walker so she's also setting me up with PT to get me out of the wheelchair. When I get strong enough to use my walker I can start driving again. I'll still be sheltering in place from the Covid-19 because my age and health issues will still be a problem.
I think my head must be shaped like a traffic cone. Every iteration of chemo cap that I've tried slips off even when pulled down to my non-existent eyebrows. I don't mind pulling it down at home but it gets embarrassing during my rare trips (to chemo) out in public.
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Penny (pennythepest),
I am glad you are healing from fracture and are not in pain. I think the world of physical therapists! They helped me so beautifully after a knee problem and knee injuries!
The head cover...I think like all things related to cancer and treatment, experimentation and sharing tips and tricks is a key to success..or at least close enough to it...
I went out on my porch yesterday where the neighbors could see me and I nearly said "the heck with it" when i realized I was out without my cap!
I was so anxious to get out in the sun I just grabbed a stretchy tank top and wrapped it around my head and I thought it looked great! Pretty patterned fuschia color! Pretty knot at the back.
I bought two actual caps from one of the online suppliers that I wear to chemo and they are stretchy too so they stay on my head pretty well. I wonder about combining strategies..maybe both a cap and a scarf...
I am pretty sure you will get a lot of advice from women here who are better at this and more fashionable than I soon!
Allie
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Penny- How long have you been on the Abraxane?? Was it the Abraxane that caused your hair to go? Did it fully go or just significantly thin and how far into treatment did it happen?? Sorry for all the questions, I'm on Abraxane and there isn't too much on the boards about the side effects of it that most women are experiencing.
Yay about possibly being able to go to oral meds!! I hope PT gets you back up and moving, and driving soon!! PT is a great resource for people undergoing chemo and different treatments!
Allie- lol glad the tank worked and was fashionable!! Maybe there will get to a time when you are comfortable, without to much anxiety, too go au natural. 😊
I hope everyone is staying safe and keep up the fight to kick cancer's ass!!🥊🥊Have a great weekend!
~Katie💗
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Ha ha ha Katie!
I went au naturel today when the delivery service dropped off an order...when I again forgot my cap! No problem, he smiled very pleasantly and waved at me from across the street and I waved and smiled. My social event for the day!
Oh and I just remembered! I was so focused on my mostly bald head, I forgot that I am also missing a right breast!
Funny the things you notice...or don't...
Allie
PS: I send my best wishes for a wonderful weekend as well to you Katie!
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Happy Saturday Everyone ... and Happy Anniversary to me! Today celebrates the anniversary my neck being broken in a car crash. Every day since has been a gift from God
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j
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J - wow, what an experience you had as a teen. Sure makes you appreciate every day! When I was out for my walk on Thursday getting my steps in before yesterday's treatment, I went down to the marsh where I saw the painted rocks and bowling pin again. Well, the pin was standing up this time. So, just like the wording on it says, "I get knocked down but I get back up again!"...it's a metaphor for all of us going through chemo, other medical conditions and just life in general. We are strong and we can do this!!! Thanks for sharing your story with us.
Sherri
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Hello ladies! Wow J!! You have been blessed!!
A heads up ladies, if you have issues with your toe nails please let your onc team know. I had issues with my toe nails with AC + T and they continued after treatment was done. Sadly today I lost one of the toe nails that was an issue a year ago.
I hope everyone has a great weekend with minimal side effects!!
Keep up the fight to kick cancer's ass!!🥊🥊
~Katie💗
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Penny: Great news about the lesions improving. I hope PT helps with your mobility. I have a small head and have had better luck with scarves. I got some easy to tie scarves from headcovers unlimited that fit pretty well.
Allie: I've gone out of the house briefly and have forgotten to put a cap on, happily waiving to my neighbors. At first I was mortified, but the more I do it, the less I care.
I find I get a better fit with the scarves when wearing a light cap. The scarf doesn't slip around as much when wearing a cap.J: Happy anniversary! I see a name change in your future, SavedByHisGraceThrice.
I am one day out from chemo #6 and feel pretty good! I went a nice long walk before my appointment, a healthy, filling lunch and drank tons of water. It was really nice having my dad with me yesterday. J - you are correct, always Daddy's little girl. There is no one I admire more than my parents, they are amazingly generous, beautiful people. My mom told me that my dad feels much better after seeing me yesterday, so it did help!
I hope everyone is doing well!
Stay strong!
Lise
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I think I get looney tunes on steroids! Have flushed face and had what I believe were hot flashes last night.
God! I did nothing but stress all day.
Had trouble with food delivery service. When it got here and I was trying to get it in the house:
Then had to clean the entire refrigerator.
Had to put call into my doctor when I could not remember if I took my steroids or not! I couldn't remember if I took other meds as well...so they were all late getting on board~
She called back right away and told me just start over again tomorrow!
Ugh...
Katie I'm on AC right now and I have not lost a toenail. I think it is the taxol that is the culprit with toe nail loss isn't it? I asked my oncologist about this because I will be going on taxol next and I have a cracked big toe nail they need to monitor. I worry about it. I am sorry about your toenail.
Lise: yes, nothing like our dads. Mine has been gone a while but I sense his quiet presence. I remember once he told me that when he and my mum were driving us on an interstate move when I was a baby, I started fussing in the back seat and when he stopped the car and checked a bee had gotten into my diaper so he found an emergency room and took me to it. That story stuck with me my whole life as a testimony of how much he cared for me for some reason.
J: I'm thinking of you and your wonderful family!
All: What an extraordinary community. Thank you for allowing me to journey along with you!
Allie
PS: And Sherri, I love the metaphor!
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Hello ladies,
I haven’t checked in here for a while and it sure has lots of traffic. Love all the pictures！
Katie- I had very bad allergy reaction to taxol, my oncologist put me on Abraxane. Right after the unpleasant experience with taxol, I developed very mild neuropathy, so I am on a reduced dose with Abraxane. 12 rounds instead of 4. I just finished my #3 few days ago without a port. My neuropathy did get a bit worst, but i can still handle it. I have hot flushes. Besides those two issues, no other side effects. My oncologist said if neurgets really bad, she will have to stop Abraxane and maybe give me another drug. I feel like this chemo never going to end. 😟
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