Starting Chemo April 2020
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I’ve been trying to keep moving most days too. Sometimes it’s really hard and I ended up taking a longer than planned walk the other night and it felt great. I was walking on a trail and a lady on a bike passed me and yelled “Hello Sherri”. Turns out it was my oncology nurse. I’m sure she was happy to see me out moving too. I was in my cheap eBay special wig from 10 years ago because it was windy. I’m surprised she recognized me.LOL.
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bazcla — hi. I'll be thinking about you Thursday. I'm doing my “first real Herceptin," that morning followed a couple days later with the loading dose of Taxol. Hope all goes well for both of us.
Debra — I'm the same way on the privacy issue. I've never mentioned it on FB and for months after the initial dx I told only family and a few very close friends. Selfishly, I didn't want to expend my time and energy talking to tons of people while I still was trying to learn what was wrong with me, the prognosis, help my DD cope, and get my feet back under me emotionally.
Couple months later, my DD's FIL dx and from the first suspicion his wife was burning up phone lines and social media. My daughter and her husband for weeks spent hours every day (often multiple times a day with the same people) telling them there's nothing new to report. Thankfully, FIL still alive and doing well now.
Recently DD told me how much she respected how I handled my situation, how she was better able to process for herself instead of spending days dealing with people she barely knew who called mostly to be nosy about her FIL (and from whom no one has heard since.)
All — I'm feeling much better after the CTs Friday afternoon. My body wages such a battle against the contrast iodine it takes a couple days to recover. One would think 150 mg of Prednisone would keep me awake for days, but it uses all that umph to win the allergy battle. I've been asleep for most of last two days. Now, typical steroid aftermath — it's time to eat!!!!! LOL
Hope all goes well for everyone this week.
j
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Les: Acne started day 4. I had really bad muscle pain on day 5. On day 8-10 I had low grade fever, chills, diarrhea, nausea and vomiting. My MO said sometimes as your blood counts start to come back up you can get a low fever. He prescribed me oral antibiotics just in case. Starting day 12, I developed a bumpy, itchy rash on both hands. Other than that, I feel great.
It's day 17 now. My hair is falling out. Had the hubby buzz it last night. Kinda sad about it. It's a double whammy. No boobs and no hair. I feel like I look like a little boy. I might finally go get my prosthetics this week before chemo #2 on Friday. I didn't think losing my hair would bother me but it is. It's alot when combined with the BMX. Anyone else really sad?
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ARmom4 ~ I'm sorry you are going through so much. And at a young age of 35. You have been hit with a double whammy. I am 60 and my double whammy comes in the fall after Chemo with a BMX. I hope you are gentle on yourself and remember this is about the "Future" ~ it won't always feel like today. It's like grieving who we were. I totally get that feeling. You are taking aggressive measures to be around for your Family for many many years to come. I'm Proud of You !! Our hair will grow back. I did get my wig and I wore it yesterday for my daughters virtual baby shower and my kids said it looks totally like my own hair. Hopefully you are able to do that as well. Think this time next year, Spring 2021. Things will be a lot better !!
Debra
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Thanks for the kind words Debra! I keep telling myself it's only temporary, it'll grow back. I think when I go get my "foobs" I might feel a little better. I thought about getting a wig but I always wear my hair up anyway so I don't think I'll even use a wig. So scarves and beanies for me. I think I'm kind of mourning my life before cancer. Like with grief, it'll get better right?
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Beautiful new do, Lise! Way to go.
I finally broke down and cut mine to chin length today. Actually my husband did it mostly. I figure I can do it in stages. Next week the clippers. Chemo starts tomorrow morning so probably have 2-3 weeks all told before it falls out.
I’m pretty nervous and it sounds like it’s going to be a long day. Should I eat anything before I go?
Nan
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Oops - forgot the picture
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Hi Debra,
I have a Fitbit too, and use it every day. I try to walk about 12,000, but have a feeling it’ll be an uphill battle after tomorrow. I wouldn’t mind doing a challenge. How do we connect?
Nan
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Nan ~ Love seeing your picture and that smile
I just sent you a private message. I would love to connect with you on FitBit !!ARmom4 ~ Everything gets better with time and our journey makes us Stronger !! You're doing a great job !!
Debra
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Nan and Debra- if you would like anymore people in your FitBit group please feel free to send me a message!😊
I hope everyone has a good week with minimal side effects from treatments and keep up the fight to kick cancer's ass!!🥊🥊
~Katie💗
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Hi Katie,
I just sent you a private message with my email.
Debra
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ARmom4, your side effects sound pretty rough. I’m so sorry! I feel like I’m heading into my “bad days.” I think I’m constipated but the Senokot I took didn’t relieve it and instead made me nauseous, which now has me taking more nausea meds which makes me constipated. It’s a vicious cycle.
I’m really struggling with insomnia. Even though I’m so tired, I haven’t slept for more than 3 hours at a time for the past week.
I feel so weak for not being able to manage this better.
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ARmom4 — You've only been living with this for four months. It ok to be sad. Your whole world has been turned upside down and with the chemo side effects you feel wretched physically.
ARmom4 and Hog copilot —- Be kind to yourself. Be as patient and loving with you as you would with a friend. 🌈
Hog copilot — not giving medical advice, just sharing what I do. When pain medicine sometimes gives me constipation I take about 3/4 teaspoon of regular baking soda (bicarbonate) stirred into some water. If it doesn't work in about an hour, I take another 1/2 teaspoon. I go slow on the amount because too much baking soda can clean me out too much. 😱
PS — you're not weak, you're just full of it right now. 😘
j
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J - I totally get the privacy thing. That's why I did the CaringBridge. I can update the people that want updates, without putting it out there on social media for everyone to see. And the steroid hunger is a REAL thing! I can hardly wait to eat when I get up in the morning.
Kelly - the hair doesn't bother me as much - I will take that all day long in trade for some of the other symptoms. But I get the sadness. The whole way of thinking now is sad sometimes. I would LOVE to hear about the prosthetics. I am considering that also - not so interested in the reconstruction option, but still open to considering. What made you choose that? And what's the process? How does it work? I won't have surgery until after chemo, so I haven't explored in depth yet. And Debra is right - we will get through this. When I first buzzed my head last week it didn't look so awful, but now more is coming out and I'm moving from "GI Jane" to "bald baby bird" status. Trying to keep the humor there. I also don't want wigs - too hot in Atlanta. So beanies and scarves for me too. Hang in there!
Les - you are NOT weak! You are a warrior and we are are struggling with things. My strategy is to research as much as possible and enlist help from people with alternative solutions. I have a great integrative PCP and I also now see a naturopath. She researched SO much about cancer and supplements for me, and put me on a regimen for Round 2 to try and mitigate/avoid the horrible diarrhea I struggled with in Round 1. So far, it's working and I feel so much more in control. Fingers crossed. I get the sleeping thing - I'm still winding down the chemo steroids for Round 2 and I'm really tired, but not sleeping well either. Last time, that resolved by Thursday so I'm powering through. Hang in there - you are NOT alone!
Kris
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Les- I'm sadly with you with the insomnia, and sadly I'm not getting the steroids to blame it on. You are NOT weak!! Your going through a massive change in your system, physically and mentally, right now!! You will have down in the dumps times and that is totally ok and normal!! Sending long distance hugs!!
Currently sitting at the cancer center waiting for my Tecentriq and "milkshake" to be made by pharmacy. The Abraxane looks like watered down milk and my chemo nurse last week referred to it as my milkshake.. then sang "my milkshake brings all the boys to the yard...." so it stuck.
I hope everyone has a good day and side effects are minimum!! Stay safe and keep up the fight to kick cancer's ass!!🥊🥊
~Katie💗
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Katie - thinking of you.
j
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Les- Zofran makes me constipated. I started 2 days before chemo taking Miralax once a day. I took it until I didn't need the nausea meds anymore. Miralax takes a couple days to really work so I took it preemptively. I also took the nausea meds preemptively to avoid getting nauseous for 3 days after chemo. It worked then. My nausea didn't really show up til day 8 when I wasn't expecting it. I still sleep okay so can't help there.
Kris- I chose no reconstruction because I was terrified of complications. Leaks, infections, exchange surgeries. I wanted the least amount of risk of possible future surgeries. I have 4 kids, the youngest is 4. I need to recover as quick as possible. As for the prostheses, after I recovered from my BMX, my surgeon wrote a prescription for bras and prostheses. There's a place near me that fits for these where I will go choose which kind I want and get fitted for bras for them.
Feeling brave today. My eyelashes are still there!
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ARmom4,
Beautiful ~ I can see the strength in your eyes. Proud of you for posting your pic for all of us to know you a little better. Your four little babies are going to get you through this ~ they love and need you more than anyone else on this earth. Stay Strong Momma !! How are you doing healing from surgery ? That's the part I'm a little overwhelmed about. That's next for me.
Debra
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I had surgery Feb. 11. It was a really quick recovery I think. I had drains for the first 2 weeks. That was the toughest part. After they came out I really felt better. 2 weeks after that, I had a small seroma aspirated. Thats a build up of fluid. It was painless as I was still numb. I had shooting pains for the first few weeks. Nerve regrowth. I have feeling back in my chest now but not on my sides. There's still some tightness. Range of motion is good but I can't reach as high as I could before. I feel like I had a really easy time of it. Way easier than chemo!
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Kelly -
Thanks for posting about the mastectomy and not doing reconstruction. That's sort of how I'm feeling also. I just want to be done. I'm a little older than you - but I also have 5 kids. My oldest son just got married and I'm expecting my first grandbaby in September, so I want to be all done and ready to go.
You look GORGEOUS! Love the buzzed head!
Kris
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Erin! You look great and I am just a little further ahead of you in hair loss! Ha ha! Let's see who can lose it first!
Seriously, I experienced the same as you and since I have no way of shaving it off has devised the "Allie's Au Natuerel" programming for going bald!
Before my shower, I have a controlled "pull out" session where I just finger comb and gobs, and gobs, and gobs of my lovely (aging) hair comes out and I put it in a pile and admire it for a while.
I then shower carefully - if you hold the ends if your hair is long enough - you can avoid it going down the drain a bit. I use a shampoo with conditioner and someone said that the conditioner will also encourage the hair to come out!
Not as bad as I thought it would be! Thank God!
Oh and I hope I will NEVER complain as I did with my former mane that it was thinning when my hair does grow back! I pulled out enough hair so far to make one or two beautiful wigs I am sure!
Allie
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Hi all!
I just wanted to say i've been reading through your wonderful posts and admiring, echoing, and supporting all!
I feel really good in the first few days after round two of AC but did have a little side effect from the Cytoxan that scared me but I've been cleared via oncologist and NP that it was a problem with the Cytoxan irritating my bladder. I think I mentioned that my bladder has gotten "irritated" after my chemos in that I have had urgency, lots of peeing, and some leaks (gasp!). Well this time I actually had a little blood clot come out and it scared the bananas out of me and I had to make an emergency called to the weekend oncologist who was just absolutely wonderful and reassuring. So, a bit of a scary patch for me. They told me that the metabolite of the Cytoxan can get "stuck" on the bladder lining and irritate it causing a clot which will get flushed out apparently and that's what I was seeing. Fun stuff! I was told to drink even MORE water! No harm. I think I'm actually learning how to handle larger amounts of water. I just exercised a full 15 minutes and that feels good. Noticed that the port area can get irritated with excessive arm movements and so NP told me just be a little gentler in my movements. I am doing just a simple "walk at home" program.
God bless you all!
With gratitude and best wishes,
Allie
Oh, the hair thing is a riot for me. I have a plan and its working and I now just have a few wisps of my mane left!
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Zarin - I've been breaking out too. I'm 10 years post menopausal and haven't had a breakout since I used to get my periods. Mine seem to be contained to the left side, which I favour for sleeping but they are very obvious.
ByHisGraceTwice - I get it about privacy. I've not shared this bout with anyone on FB and only a few close friends and family members know. Your DD's MIL may have found comfort in the support of others during her husband's cancer diagnosis. Glad to hear he's doing well. Also, sending prayers for good CT results.
ARmom4 - regarding prothesis, have you heard of Knitted Knockers? I had a BMX at the end of January with reconstruction but had to have one removed in March due to infection. Therefore, I'm now flat on one side. I ordered a pair of knitted knockers and they were sent to me for free. They are lightweight and machine washable. You can learn more here: www.knittedknockers.org
Nan - you look great. Nice to see you smiling face!
Allie - glad to hear your bladder scare is not too out of the ordinary. I actually notice I drink a lot when I get home from chemo but not much is coming out. It's almost like my bladder is retaining the liquid. Then in the middle of the night, it starts to release. I was wondering if this was normal. I'm going to ask the oncologist. Cytoxan bothers my sinuses and I have to have it infused more slowly than normal.
I hope everyone has a great week and experiences minimal side effects!
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First chemo done - yay! It went well and no allergic reactions to the drugs so far. I feel okay right now, a little tingle in my feet and hands but not bad. Just took a long walk with the dog. The weather is good here today (for a change!) so I'm taking advantage of my current state of energy and the sunshine. My blood pressure was really high this morning from the anxiety. It's amazing - I didn't have a clue it was that high. When they took it 2 hours later, it was still a bit high, but not astronomical. I think I might need to get a BP cuff so I can check it. Usually it's really low. Just goes to show you.
I hope everyone is doing well. Katie so glad you've joined Debra and me on the FitBit challenge. I've never done one before. It's really nice to have company
And Debra, thank you for setting it up. I have a feeling I'm going to need it!Here's my hospital picture. I was about half way through at that point. It really is hard to wear a mask all that time. I got my lunch on it
Good thing I brought a spare! Oh, and that Neulasta OnPro thing is very strange. I had it put on my stomach because I was afraid I'd bump it on my arm. Was all nervous about the needle sticking me. Didn't even feel it! Just goes to show how much fear of pain is worse than the actual pain. I have to get myself some meditation tapes..Nan
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Nan,
Yay about 1st chemo run being in the books!! Im very thankful for the fitbit invite though your a good ways ahead of Debra and I, lol. My stomach iit's causing difficulties with ne catching up. Going to still try to finish up my walk. About the b/p, hopefully it will come down next run given you have an idea how it will go and how you'll react to it.
Have a great day and stay safe!! Keep up the fight to kick cancer's ass!!🥊🥊
~Katie💗
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Thanks for the tip Sherri! I had heard of them once but totally forgot til you mentioned it. I just ordered a pair.
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Katie — how did today go?
j
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Nan -
Glad Round 1 went well! I was laughing about the Neulasta, because I put it on my arm. I was afraid to have it on my stomach because I'm a side sleeper and I thought it would interfere. I came home from my Round 1 and literally within the first 15 mins of being home, went to let the dog out the back door and hit it on the door jamb. Peeled it partially off my arm, but caught it before the little catheter pulled out. My husband took paper tape and strapped it back on my arm within an inch of its little life. Thankfully, I got the majority of the dose - a teeny bit of leakage, but they said it was fine. 30 minutes after my first chemo and I was already on the "naughty" list! This time, I brought paper tape with me and he strapped it down in the parking garage before we left to head home! All went well this time, so I'll be doing that going forward.
Kris
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J- chemo went good, thank you for asking! Dealing with upset stomach now but that will only last so long.
How do you ladies get your treatments? In a private room or a room with multiple other people?? I recieve mine each time in a private room.
Have a great day and I hope your side effects are minimal and easily managed!! Keep up the fight to kick cancer's ass!!🥊🥊
~Katie💗
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Sherri, Yes I have the same problem with getting up at night for the first couple of nights after chemo in my very limited experience of having two sessions only so far. But in some ways, I feel a bit better re: bladder than last time (other than the little suspected clot..). I had some leaking too! Ugh! just felt very silly and out of control. On the other hand, since I'm menopausal, I tend to get up at least once a night anyway and so this is probably not a big departure from my normal patterns anyway!
I think there is SO MUCH going on internally with us this is just the way it is going to be - all sorts of things an our bodies doing what they can to fight/adjust/compensate.
I was told to amp up the water because of the irritation so I'm doing the best I can. A compounding element in my case could be also that I am tending towards constipation (and worrying about it) and I don't think that helps the bladder any and so I'm going to try to work even harder on this aspect.
Nan - your photo is fabulous!
Allie
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