Starting chemo April 2023
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Ha. So one would think this. Unfortunately, we have 3 options each time that we move. Toss it, bring it to the next post or send it to storage. Storage is limited, but there is a LOT of it so it is the low hanging fruit. We have unfortunately made the storage choice on numerous occasions so have about 12,000 pounds of something scattered between the European and MD storage facilities. Like literally stuff that I haven’t seen in over a decade and have no idea what it is. Or was too lazy to get rid of so just kicked the can down the road. Or stuff that our parents pawned off on us once upon a time:). When we retire, we get it all delivered and can do some serious Swedish death cleaning.
Okay. Off for Father’s Day celebrations! Have a great evening.
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That's an impressive quantity Bird! I'm working on cleaning out a corner of my basement today. One small section at a time is about all the energy I can muster. I slept for about 16 hours yesterday. I think the only thing I managed to accomplish was driving to the grocery store to pick up my order. I put all the perishables in the fridge and then went back to sleep.
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NJ: So sorry that you are feeling so tired! I think the meds really start to build up and take effect as we reach the end here. I hope that you feel better today and a bit more energetic. I think the disadvantage of weekly is exactly this. There is very little break time. I feel like the weekly steroids are making me more puffy as well now.
Cat: Thinking of you and hoping you are feeling well. Hopefully it wasn’t too hot in Atlanta!
Mouse: Hoping your birthday hair shaving party went well ♥️.
I have Echo today and am surprisingly nervous. Fingers crossed it is holding up okay to the HER2 meds. It needs to be in great shape for this next phase. I also have a cyst on my back that I need to show them tomorrow. I am pretty certain it is a skin cyst, but any lump and bump freaks me out. Seriously. If my body could just cooperate by now creating new bumps to worry about, that would be nice. We had a nice weekend though. It is so good to feel normal. Like it gives me hope that normal life awaits me one day. Sunny afternoons, wine with a view, exploring new places, pleasant hikes. Chris is off for Juneteenth so we are going to try to go to one of my favorite spots for a late lunch/early dinner.
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Good morning!
Iamnobird: I'm glad you had a fun weekend and plans for today sound fun too! I hope all is okay with the new bump and that your team puts your mind at ease. Cutting our bodies a little slack, they are being pumped with all sorts of drugs and are pretty busy attending to all of that. Also wishing you strong results from your echo! /flex
Catm: How was the weekend? I hope you got lots of rest and had some fun!
Mouse: I hope all is going well!
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Hi All,
Thanks for the birthday wishes. Was going to do the head shave, but we got too busy to take out the clippers. Bird, love the concept of living more minimally, but can't quite seem to put it into practice. Still have all our son's stuff on MY porch (was supposed to be my serene space). Can't quite throw out the 49-year-old wedding gifts we never used. The only thing of any real value is my piano, and that is my therapy, except I've been too tired to play lately. Chemo with RC starts on Thursday. I have stupid questions to ask my oncologist's office (like, where do I actually go for the chemo, is there a bathroom nearby…potty anxiety [cat's recommendations above regarding "sides" duly noted], is there an electric outlet to plug my battery-chewing tablet into. etc. I think the first one is going to be the most anxiety provoking.
The port is still where it's supposed to be, and it rather looks like a pale version of the Junior Mint I had stuck to the dashboard of my first car and used as a pencil holder.
NJ, hope your burgers turned out great. I'm a vegetarian, and I worry about getting enough iron and protein. Hubby can't eat dark green, leafy veggies (of course, where all the iron is to be found) since he has a history of calcium oxalate kidney stones. He's not supposed to go heavy on dairy either, but that's kind of flown out the window so that we at least get some protein. I'm going minute by minute so I don't have an OCD, type A personality, workaholic meltdown.
On a brighter note, the visit with our son was lovely. No drama. He brought flowers, a carrot cake for Father's Day, and a cheesecake (OHHHHHHHHHHH SOOOOOOOOO GOOOOOOOOD!) for my birthday as well as a balloon. Our new kitty, Mr. Tipsy, is scared to death of the balloon, though he LOVES the cheesecake…lol.
Bird, 76 does sound kind of high for your part of the world. It's 90 F here but the humidity is down a bit. Cat, I am thrilled that you've spent time in Clearwater. I'll avoid the beach this summer, though I really miss standing out at the end or Pier 60 at sunset or watching the waves come in. Good luck to all of us this week with chemo, radiation, testing, scans, etc. Slainte!
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Hi gals,
Apologies for going a bit AWOL over the weekend. All is well with me. I was just tired and was enjoying lounging about (even more than usual) as hubby and daughter were out of town in RI checking on my mother-in-law (88), (Mouse my father-in-law (92) recently passed away and he had around the clock helpers so we are figuring out my mother-in-law's needs). Hubby and daughter were also working on getting our "summer house" right nextdoor ready for some summer renters.
Hoarding: Ok, so my in-laws were/are the REAL DEAL on the subject of hoarding. It is just crazy when you see it up close and real, which I have for 40 years (met hubby in college). It's a blessing that hubby and his bothers started cleaning out the house a year ago. IF a social worker (both in-laws fell last fall and ended up in rehab) had walked into the house prior to months of cleaning, he/she would not have gone along with ANYONE living in those conditons, let alone 2 elderly people with mobility issues. Ah the stories I can tell! My daughter is still in RI and still "cleaning out". "The Gentle Art of Swedish Cleaning" sounds fun- will check it out, probably on Peacock instead of reading it.
Dogmom: Will this upcoming Thursday be your first AC treatment? Couldn't quite tell with your post. I am nervous about AC as well (know we all are)- I want to say how glad I am that we will have each other as at least 3 out of 4 of us will be getting AC/EC. Bird: when will you be getting the equivalent (EC I believe?) ? Dogmom: call me if you want to chat anytime before, during, or after the AC. I am here for you as one of your "Breasties". Oh and LOVE that your chemo friend brought you a friendship bracelet! Silver linings.
Bird: Can you please report back on the echo and the cyst? Hoping that all went well.
Mouse: Speaking of chemo…. My opinion is that there are NO stupid questions. I am confident that you WILL feel SO much better when you have the first treatment behind you. When is your first treatment? I am tempted to scroll back though the threads but last time I did that, I LOST all of my typing, and I am a terrible typist so…. Love the photo of you and your son. You really look great and such pretty hair. How old is your kitty? I have an 8 month old kitty, "Birdie" (yup, more of our theme). A "lilac" Scottish Fold. I have more photos of her than I do of my human children (she IS a kitten so…) She is SO sweet and a wonderful cuddle friend.
Dinner last week with my girlfriend went well. Nice to feel "normal" and felt very "normal" (ha ha) after 2 martinis. (I have been good about limiting my adult beverages to 4-5 for the week.) The SIDES were also behaving that evening. Phew.
I have been obsessed this past week with the "knotted headband" look. Bird, we ARE "birds of a feather" as we both love to shop online for various "looks" in anticipation of hair issues. I have bought 4 headbands so far- they take care of a lot of hair issues for me. I'm enjoying the on trend look, at least this week.
Silver linings: Last week a friend bought me 5 hats, 3 she brought back from France. She is defintely a "hat person" and the hats she brought me (I had no idea she was doing this) are so fun! It really touched me. Today, a friend met me at a garden nursery. We bought some flowers/plants and then she came to my house and planted the patio pots for me. So nice!
Bird; Good luck with chemo tomorrow,
Sending Chemo Kisses and Virtual Hugs,
Cat
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I was watching NCIS reruns last night and just as Abby opened the door to reveal her gruesome stalker, my power went out! The timing was impeccable. I ended up staying up for several hours from the adrenaline rush. 🤣
Swedish Death Cleaning update: The bin is full, plus 1 contractor bag plus a dozen Christmas wreaths that I have no desire to iron the ribbons they hung from EVER again. A fresh wreath on each door and I'm calling Christmas decorations done in the future. haha I have an appointment to service my car this morning and there's a book drop in the parking lot next door. I managed 40+ books for this round. There's another bunch of things I no longer have to dust! Yay! And the K1 race boat should be gone this week. Not too shabby!
Cat: No apologies necessary for AWOL. We all need down time and it is in line with not doing cancer on weekends! I can't find the chef kiss emoji - perfect for this occasion. Glad you had a restful weekend and that you enjoyed lunch with your friend. If you're feeling like modeling one day, I'd love to see your new hats! I have two more weeks of carboplatin and paclitaxel then on to AC. I should start AC on 7/6 if they continue with the Thursday infusion day.
Mouse: Lovely photo of you and your son! Cat, Bird and I are all scalp cooling to try to keep our hair for as long as we can. Have you considered it? It's probably the worst part of the chemo routine but thus far we all seem to still have some hair left. That might change as we move on to AC/EC. Brid is the resident expert on stylish head coverings and fun wigs. If you scroll through this thread, she linked some resources. We've been checking in with nutritionists/dieticians at our infusion centers to get tips on getting our bodies what they need through chemo. Do you have an oncology nurse coordinator or social worker assigned to assist you through the process? They can help set up appointments for this sort of consult. Did you have chemo training yet? Did they suggest using lidocaine cream on your port prior to your infusion? It works really well. Some resources for that:
Bird: Hope all is well with the bump and that the echo confirmed how strong you are! Sunny afternoons and wine with a view awaits. We will get there! Sending big hugs your way!!
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Good morning, Ladies,
I just did it again, typed something and inadvertently hit the wrong key, losing everything I had typed. After retiring from nursing, I took up medical transcription, but I just cannot type on a straight keyboard or laptop to save my soul. My split (ergonomic) keyboard isn't made anymore, so can't get another to hook up to my laptop.
Cat - I hope you found your weekend to be restorative. I lose track of what day/date it is, so weekends don't seem like weekends anymore. Re" scalp cooling, that would probably help my migraines, but to tell the truth, I actually don't care if my hair falls out. One less thing to wash….lol. I did get a lovely head scarf from my husband for my birthday, and I ordered a wig online (not a good one, but it looks close to the way I currently wear my hair, and yes, this Thursday is my first chemo treatment. I bought some Aspercreme with lidocaine (no worry, no actual aspirin in it). Not quite as strong (I think only 4%), which I've been using around my mastectomy scar and incisions from the port surgery, and it works reasonably well. Have to careful with any lidocaine-containing medication. Even though it is applied topically, it is systemically absorbed and can mess with heart rhythm. Re: My kitten is now 7 months old (I think of him as a naughty adolescent. He looks like he has Abyssinian in him (long legs, bit ears, small head with huge eyes, and a "ticked" coat (meaning the individual hair strands are themselves striped. Three cats, and like you, I have way more pics of my fur family than my human one…lol. Loved that your friend brought you hats and helped you to plant flowers. I tried gardening this morning, but had taken a walk (only 1/4 mile) and was out of breath and exhausted. Most of my favorite plants are on the porch, so I can get to them at some point without having to do the whole sunscreen thing.
Dogmom - you sound like a cleaning superhero.
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(Continuation of truncated comment above): Thank God I hit the save draft key. Thought I just lost the entire post. I'm going to check out the Swedish Death Cleaning thing. My mom was a hoarder, and at the end of her cancer journey (lung and liver), she had home hospice. It took my sister an entire month to clean out the spare bedroom so that the hospice nurse would have a space to stay in if needed. My mom was pissed, because with all the decluttering, she couldn't find anything. I don't like leaving a mess that someone else will need to clean up if I'm gone. Take a picture if you want to hold on to something. A memory stick will be much easier to store than all the objects I don't have a real use for.
Bird - hope all is well with your echo and the possible cyst. Saying prayers and sending you positive energy.
For all - Thank you all for helping me find a community of brave and compassionate women. I don't feel nearly so alone and scared with all of you here. Make sure you get the rest and nutrition you need, the support and help you may not feel able to ask for, and the strength to carry on the good fight. Virtual hugs to all or you.
Mouse
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Hey ya’ll! I am thrilled to see how chatty everyone has been. I am happy to report that my last Paclitaxel infusion is done! The premeds hit me super hard and I slept through most of my infusion time and have been asleep for 4 hours at home! All good now though. I am also happy to say that my heart looks great! It was even slightly better than when I started. Probably because I was just coming off surgery when I starts chemo and actually walk and exercise a bit more now. And the doctor came to check out my cyst and I am still the most excellent armchair doctor ever. It is an epidermoid cyst. “Nothing to do with cancer.” They can remove it if it bothers me, but he didn’t think that was necessary now. It is inflamed because I have been poking at it, but not infected. I am so relieved. Even though it seemed likely that was the case, my mind went some dark places at 4 am. Anyways. I move on to EC on July 4. So happy 4th of July to me 🤣🤣. My nurse keeps emphasizing that the good thing about EC is that I should have 2 normal weeks each cycle to look forward to even if the first week is rubbish. And yes, EC is pretty much exactly the same as AC. Will you scan when you finish the 4 TCHP and decide from there on future treatments?
NJ: Oh man! You are a busy, busy rock stat. I actually love purging stuff so much. It feels pretty liberating. I love the part of moving when you setting into a new place and everything is so clean and new and organized. Then you live within a bit and start to collect junk again if you are me. But putting things in their places is so satisfying. The Finn’s really are so minimal in general. Y’all would laugh at the size of the bedrooms. They are tiny with only space for the bed and a wardrobe. They also don’t own a ton of clothing and rewear the same pieces a lot. I am a failure in that regard.
Cat: Hey! So glad you had a nice weekend and the French hats sound great. Please do model some if you feel like it. I like the sounds of a knotted headband also. Your friends sound so lovely and thoughtful. I met my husband in college as well. My very first semester, he was president of the environmental club. We have been married 29 years this July and together 33 years.
Mouse: I love that picture. So, so sweet. It is good to see you. You sound like you are preparing well and have a great attitude. I try, but I can’t really get over the hair thing. As the hair sheds, I am slightly less attached but I am going to be sad when it is completely gone. Good for you to walk a bit! I feel so much better when I manage to walk 20-30 minutes or so a day. It really helps with side effects for me. My other chemo tips are to moisturize everything, rinse your mouth with baking soda and salt. I also take a daily probiotic that I think has helped me avoid a lot of digestive stuff so far. But ask your oncologist. Some are more strict on stuff than others and some don’t like probiotics. I try to get yogurt in me regularly as well. My nails look okay. I use an oil on them a couple of times a day that is made for weak or damaged nails. A good hand moisturizer can also work for that. And I take cranberry supplements go prevent UTIs.if your skin breaks out, let your team know as they have so many resources to sort you out. You will be the first to start AC, but the rest of us aren’t far behind you. So lots of love and support here. Chemo day is Thursday for you and NJ. I would love to see your kitties as well. 7 month old sounds adorable! I have 2 cats and a dog and they are so fun.
Okay. Ending with a truly awful pic. I realized I could barely get the 9 fingers in there because of the IV. We waited a bit too long to snap it. So, all around awkward. But hey, 9! Fake it ‘til you make it with that smile.
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Mouse: I think I saw a split keyboard at Micro Center when I was last there and there are a bunch of options on amazon as well. They may not be exactly what you had but may be more comfortable than a laptop keyboard. Hope this helps!
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Good afternoon gals!
What an exciting morning it has been (thankfully not “c” related). Mouse: I never capitalize the “c” w cancer as it doesn’t deserve it! And will be secondary in the future!). We ran into traffic getting to the center (weird at 9:15 am) then found out there was a bomb scare in the building so the building was locked down & partially evacuated. Thankful I’m in the chair getting the juice, albeit a bit later but fine by me.Mouse: so glad you joined & are enjoying our chats. I thought the same as Momdog that you might want to explore cold capping but sounds like you are good with losing your hair. The patient next to me today didn’t cool cap & she has some re-growth. It really looks good on her!
Mouse: also agree with Dogmom about the litocain (sp?). I’d get straight litocain (w Dr ok) for the port AND I was told to put it on an hour beforehand today. I did that today & barely felt it.
Mouse other chemo tidbits: some discussed in thread but way way back:Also- plain Claritin (no “D”) taken a couple days before etc for leg pain (which is one of my big sides).
B-6 100 mgs for neuropathy. (Nurse today)Ice chips during chemo to prevent mouth sores (not too much of an issue for me).
Potty breaks: totally forgot you can take the IV pole with you to the privy so that’s great, at least at my center you can.
Iced booties & mitts during the chemo drugs to help prevent neuropathy. I’m doing this. Bought on Amazon: Elasto-gel (around $25-$30, not sold as sets, individually). I’d look on Amazon but scared to death I’ll loose my typing! Ha!Bird: Awful pic? Heck no! I want that gorgeous hair & you still look so pretty! I’m sure not your best but you really do look so good for all that you’ve been through. BTW: I had my hair cut my hair last week & my stylists shagged it out. It’s much better & glad I kept my appointment. I’m going to send a picture, but it looks better w the curling product which I skipped per the cold cap instructions.
What is the nail oil you are using? I’ve never had good nails (very soft & tear)- plus I’ve ordered nothing yet on Amazon today with the bomb scare etc so I’m WAY behind. (Mouse: Bird & I MIGHT have a bit of an online ordering problem?)
“The Gentle Art of Swedish Death Cleaning” - watched first 2 last night & night before. I’m thoroughly enjoying & getting inspired!
Dogmom: cracking up over the wreaths & bows. You are inspiring me to CLEAN OUT! Lots of closets & storage is great (which I have) but then at some point they cross over to time capsules.Dogmom: hope it’s not chemo brain (which I def have), but did you tell us what the pet oncologist said? The call you were waiting on on Friday? Hope your fur baby is resting comfortably.
BTW: I joined a cold cappers Facebook Group and it appears as though a decent number of those ladies kept a good bit of hair with the AC/EC chemo. You both seem to have a lot of hair so fingers crossed!
Good luck Thursday Dogmom & Mouse. Mouse you WILL be so relieved after Thursday & the teams at the centers know what they are doing & are prepared!Xo
Cat
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Bird: chemo brain! Delighted Echo/heart looked better than before- AWESOME! and that the “cyst” is nothing to worry about. 👏🏻👏🏻👏🏻👏🏻👏🏻👏🏻👏🏻
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well gals identified several typos on my re-read of my long post (“my hair my hair”) but oh well! Steroids, Chemo Brain & fear of losing my typing!
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Cat: You look truly gorgeous, and dare I say, glamorous even in the chemo bed. Thanks for sharing that some folks kept their hair. Mine is definitely thinner every day. I’ve told my husband he absolutely has to tell me when he can see bald spots so I can take action. And I have to say that that I found the ice mittens the worst! I could barely stand it for my infusion. I did do it a few times, but I couldn’t even consider icing the feet. So freaking cold! Hopefully I don’t end up with neuropathy. I am using a Swiss nail oil called Poderm. No clue if it is doing anything or not, but my nails are growing a bit. I am a serious nail biter, but have managed to stop as the last thing that is helpful during chemo is biting nails and introducing infection. Have a good session. And wowza on the bomb scare!!! That sounds nuts.
Dog mom: Yes, please update us on your call with the dog oncologist. I have been thinking of you. ♥️.
Yeah. I did a zillion loads of laundry, bought a bunch of groceries and did some low key internet shopping 🤣🤣. Just a teeny tiny bit though. Otherwise, nothing exciting. My kids do not want to go to an electricity free cottage and swim in the freezing water for midsummer holidays. Party poopers. There is literally nothing open here to do as all Finnish folks are at said cottages grilling, drinking and hitting the sauna. Even the movie theaters are closed. I have threatened family day trips filled with mandatory fun. We shall see.
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Looking awesome Bird and Cat!!
Mouse - just getting ready to get into pre-chemo mode and with chemo brain, I have things written down on a big sticky note. Thought I'd share them in case they are helpful to you. I've curated the stuff in my backpack over the past 10 weeks. I've become pretty minimalist.
Cat: loved episode 3 where the woman inherited stuff from her mother along with guilt baggage that she had to keep all of it. So freeing to kiss the stuff goodbye!
Tonight:
Tidy cold cap bag and cap
Pack wide headband
Pick a V neck shirt (which sometimes turns into do laundry and then pick a shirt)
Prep a bento box breakfast/lunch (I'm not a fan of the provided sandwiches)
Charge phone, ipad, magsafe battery and pack them
Freeze a water bottle
Sticky note for selfie and questions for oncologist into backpack.
10:30 pm pre-meds (dexamethasone) I have a standing alarm on my phone for this too. Note: they didn't have me take these for first chemo.
Tomorrow morning:
- Lidocaine on port (I aim for 90 minutes before labs appointment. I have an alarm on my phone for this.)
- Pack electronics
- Pack bento, frozen water bottle, ice pop, big water bottle, seltzer
- Pack wallet, key fob, coffee to go
- Dogs to daycare (or now dogs walked)
Always in the backpack:
- A cosmetics bag with hand cream, cuticle oil, tissues, lip balm, Burt's facial towelettes
- A cosmetics bag with a phone charging cable and plug, AirPods (which I always forget to recharge)
- A cosmetics bag with wipes and spare panties because you never know
- Pens, a highlighter, a notebook
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Hi NJ. Thinking of both you and Mouse tomorrow!
Mouse: Here are some notes given to me when starting chemo from my super experienced oncology nurse, in case it helps. The brand names differ, but I think the information transfers to the states. I am big on moisturizing everything all of the time and drinking tons of water. I love fizzy water and also coconut water. And I do drink a bit of wine as it is something I enjoy, but usually only 2 small glasses a week.
“Your skin and mucosa will dry up. Start using a little more body lotion, hand cream and foot cream ( you can use hand cream as well for feet)Rinse your mouth several times a day with salt/ bicarbonate-water : 1 teaspoonful of salt/ baking BICARBONATE in apprx. 2 dl of water.
In the evenings rinse your mouth with a spoonful of olive(or other)oil and then "lubricate" your throat with a new spoonful of oil.
If you nose feel dry you can use the same oil for your nose (or you can buy A-vita nosedropps from the pharmacy)
Your genital area may dry upp : use oil ( e.g. Ceridal oil from the pharmacy ) to moisturize the outside. To keep your vagina in good condition you could use Repadina or Vagisan vagitoriums , maybe not every night but several times a week. You may not be allowed to use products that have estriol or estradiol so stick to those that are nonhormonal , if they don't do the job you may be able to use a low dose hormonal vagitorium but this will need to be discussed with the doctor. ( Or your gyneagologist) . Having intercourse we recommend you use a lubricant ; but using Vagisan vagitoriums may do the job as well.
Of the against nausea medication you got written instructions, follow those and keep in mind that nausea, pain and itching are all symptoms that are easier to keep away and treat immediately than to get rid of them once they have started .
If you would need something for instance for headache : you can safely use acetoaminophen which is called paracetamol here is what they call Tylenol in the States , here common brand names are Panadol and Paratabs.
If paracetamol does not help you can try ibuprofein , here it is called Burana or Ibuxin amongst others. ( Bufen or Ibu-Tab in the states but has other names too). You have to remember that ibuprofein irritates your stomach .
Do not use Aspirin, Ketoprofein or medicines with diclofenac without us knowing since they can cause bleeding if your platelets are low at the same time.
You are allowed to exercise as usual and eat all the foods you like. A glas of wine is ok sometimes, not daily and try to minimize alcohol in order to spare your liver for chemo. Food will loose taste and or taste different.
For dry eyes we recommend Tearsagain,BepanthenEye, Systane . Our recommendations are based on what we hear from other patients. It is often good to have liquid drops or a spray for the day and gel drops for the night.”
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Dog oncologist call on Friday was disappointing. They set up an appointment for Tuesday the 27th. They had an opening for last Thursday but I couldn't take it - chemo day. Pup pup isn't a happy camper although he's managed slightly longer walks these past two days. By slightly longer, I mean end of the block and back vs. just hanging under the sun umbrella near the kitchen window. Thanks for asking. 😽
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NJ: I am truly sorry to hear that, but glad you only have a few more days to wait for the appointment. I know it is so hard to see your beloved fur babies sick 😢.
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Attention all the ladies of the pet store, code brown….cleanup in aisle 8! (but thankfully no bomb threats…the world can be a scary place these days.
Bird and Cat - I love the pics. You both have hair that looks worth trying to save. I had surgical menopause after uterine ablation, and ever since, I have had thinning hair at the back of my head. The scarf came in handy to hide the bruising from the port insertion.
Today was my first day of A/C, and fingers crossed, everything going well so far. The nurses were really good and premedicated me with IV ondansetron. The red pee was pretty weird, but it's already starting to return to normal. I'll have to go back tomorrow to have the pegfilgastrin (bio-similar of Neulasta - bone marrow stimulator) injected as insurance doesn't pay for the pricey auto-injector, and although a cool idea, I don't think it merits the $3,000 USD it would cost per injection. Mostly tired and have a migraine (which I routinely get), so praying that there won't be some kind of crash later. At least I've overall dealt with the fear factor of being a newbie to chemo. Thank you, Bird, for all the tips about mouth sores, dry skin, and assorted other problems and thinks to bring with me. I brought some "fidget" toys as well, as I always need to be doing something - still haven't solved the Rubick's cube. I know that constipation is pretty common, and I am on an insane amount of stool softener and bowel stimulant, plus MiraLAX several times a day. My "normal" used to be 1 BM every 2 weeks and don't ever want to go through the sequelae of that idiosyncrasy again. I hope that it doesn't deplete my sodium levels. Such fun.
Thinking of returning to work on 7/10 (I work from home, just a desk job), and my employer is really good about making accommodations (plus, my manger is a breast cancer survivor herself). Will see how I feel by this Monday after the first wekend with post-chemo effects.
Dogmom, I'm trying to resist ibuprofen, as I have a history of diverticulitis with a colon bleed in the last year (but then I was really taking way too much of that for my headaches). I'm eager to go back to the chiropractor to get my neck cracked, as that addresses several issues at once. Just as soon as the neck incisions from the port placement attempts heal). I'm sorry to hear that your pup is hurting so. We had a Sheltie a number of years ago who developed a spinal tumor at around the level of the spine closest to the shoulder. We took him to a veterinary oncologist, but the options all sounded painful and wouldn't buy him much time (including amputating his front leg - would have considered that if he had been younger. We ended up having him euthanized, and as the word means, it was a "good" death (if there is such a thing). I held him the whole time and cried for a week. When we got home, I said to my husband, "we have to go to the dog shelter, NOW." Getting another dog was the last thing I thought I would find myself doing, but a little voice in my head kept telling me this is what I needed to do. Most of the dogs at the shelter were named "Killer" or something like that and behaved as though they were prison inmates intent on causing mayhem. As we were preparing to leave, this really shy but beautiful golden-haired beauty came out from under the counter where the staff were working, and one of the shelter staff said, "What about this dog?" She (the dog and not the staff) had been pregnant at the time she was picked up, and they let her have the pups, then let her welp them and spayed her. She only had 24 more hours before she would have been euthanized, so they let us take her on a trial basis" (she had been returned by her previous adoptive family because she was too shy. She escaped the harness on her first walk, but she ran back "home" and was waiting for me in front house. She somehow knew this was to be her "forever" home. So a really horrible ending for one beloved dog, and a second shot at life for one who would otherwise been put down and who mended our broken hearts.
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Mouse: So glad chemo 1 is behind you along with all the anxiety that comes with not knowing what to expect. How long a drive is it to get the pegfilgastrin shot? Probably good to go to the infusion center for your first but perhaps you can get the others locally if it's a long drive. Perhaps your infusion center might have some suggestions. Thanks so much for sharing your dog experience. I suspect I'll have to euthanize him in the coming weeks but want to get the oncologist's input and then give him as much time as he stays engaged. Still barking at the UPS guy,
Human oncologist visit was uneventful. Bloodwork is less than stellar and as expected.
Chemo was uneventful. I slept through most of it, stopped at the vet to pick up refills for the pain meds for the pup and didn't quite make it home in time to use the restroom. I have joined Cat's club. I'm hoping it's a one time event and the result of too many veggies all week.
Going to take a nap. Will post again later!!
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Good evening. Today I am thankful for naps. Naps are amazing. So amazing I might need another one😀which brings me to:
Swedish Death Cleaning Update: Trash day tomorrow so I have to put a couple of hours into getting the bin full before the morning. I have to get the areas where there is a French drain cleared so the Radon mitigation team can do their thing on Monday. Current plan is that anything that's easy to toss gets bagged and brought up for the trash. Anything else will be moved away from the walls toward the center of the room so I can get drop cloths over the pile of "stuff" and keep the dust under control. I know from last week that crash time is hitting sooner so I only have until middle of tomorrow.
Mouse: In anticipation of AC coming in two weeks, I did a bit of reading on pegfilgastrin shots. It seems like it's just a subcutaneous shot and that you can give it to yourself if your healthcare provider approves it. Being a nurse, I'm guessing you'll rock this. I'll aim for that route if the auto injector isn't covered by insurance.
Mouse: As for back to work, I was working from home and took short term disability because I found that I was becoming exhausted. I had some serious concentration issues. I couldn't get through an email chain on the first pass, sometimes not even the second. I was also needing naps in the middle of the afternoon. I was having trouble finding simple words during meetings. I had a really supportive manager but was finding it stressful. I hope you are able to return to work on the 10th but there's no shame in giving yourself time to rest and heal. Be kind to yourself. You totally deserve it!
Mouse: Have you resolved your hearing amplifier issue? We have a group voice chat on Fridays and you are very welcome to join us. We use Teamspeak. Let me know if you're interested. I can try to help you set it up. Cat and Bird used local tech support (husbands, children) to get it working.
Cat and Bird: I set up an ENT appointment but the earliest I could get that was within a reasonable driving distance is August 9th. Mentioned this to the oncologist today and she said she'll make some calls. She was pleased with the ENT I selected - head of the department in the same hospital. I asked if another round of Cipro is a good idea and she suggested not yet. There are side effects that are rare but concerning. Better to avoid the risk if we can. A risk/benefit conversation we can have if it becomes necessary. Thanks for keeping on me about this. After the dentist appointment yesterday, it was clear that he doesn't have tons of experience working with chemo patients. Perforated sinus did not heal as he had hoped. Oncologist noted that I've kept quite a bit of hair cold capping. I acknowledged that she told me it wouldn't last through AC. No harm in trying!! I have to say though, the silver lining will be NOT cold capping. 😂
Bird: where did you get the awesome headwrap that looks hand painted? I have to put some serious effort into headwear over the coming two weeks. In the interim, I have a couple of soft beanies and straw hats. I've been surfing the hat sites that Cat shared. Some awesome hats out there! I have to figure out the sizing. I have a giant head.
Selfies from today sent in a message to the three of you. Continuing to avoid personally identifiable info in the public forums. :)
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NJ: Thanks for the update. This is the seller of the hand painted hats. But she is in Bulgaria and shipping took ages, even to Finland which is also in the EU. I am not sure if you would get the hat before finishing chemo. But, they are very comfortable and not too hot or heavy and easy to wear. I’ll also post another company who makes nice caps and is in the US. Not as funky, but really comfy and easy to wear.
Good to hear that all went well and that bloodwork is normal and uneventful albeit on the low side. And I am glad your doc is going to intercede to get your appointment moved up. Enjoy your steroid rush today and get a lot of cleaning done.
Mouse: Congrats on having your first day behind you! I am freaked out by the red pee, but glad it passed quickly. I hope the meds don’t cause you too much digestive grief. So I will be giving myself the shot. I could return to the hospital to get it, but they said it is prefilled and quick and easy. We did 15 injections of blood thinners at home after my mastectomy and DIEP and they said it is just as easy. So we decided to just do that. They don’t seem to use the auto injector here at all. So maybe they will let you do that if you decide you don’t want to return each time. Anyways. I hope that you continue to feel okay. Chemo is crazy because reactions are so individual and all over the place.
I have bald patches in the front and sides where my cap wasn’t tight enough I am pretty self conscious of them and use headbands and scarves to disguise them. But it is making me think about shaving soon. I just feel that going into EC with hair that is already so compromised means that loss is inevitable for me at this point. And that maybe it will just be a relief. Ugh, I don’t know. I am a big chicken.I should be on the call tonight! We are doing a crazy road trip tomorrow and so are just around today. I’d like to see the midsummer celebrations on the islands, but they are really crowded and it just seems foolish right now. But bummer. We are hoping there is a bonfire on the beach by the house so we plan to take a walk. If we are still awake when it gets dark at 11 pm.
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Thanks so much for the cap links Iamnobird! I haven't scheduled my buzz cut yet. I'm still in wait and see mode. My cap doesn't fit well around the crown of my head so I'm thinking I'll be sporting the monk hairstyle over the coming weeks. The oncologist didn't have much hope for me hanging on to hair through AC. I'll poke around in the forums to see if anyone has had any luck with it.
I'll be on at noon. Catm mentioned that she can't make it. Not sure if Mouse is interested and able yet. Waiting to hear back from her.
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OK! I might possibly be just a few minutes late, but probably not. Grilling the hot dogs now:)
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I think you got disconnected. Not sure if your internet is out. I'll hang out for a bit to see if you return :)
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Hey. Here are some good news links on the new study about breast cancer.
Some highlights:
Women who were diagnosed in 1993–99 had a 14.4% risk of dying within 5 years. This fell to 4.9% for women diagnosed in 2010–15 (see ‘Improved odds’). The results were published1 on 13 June in The BMJ
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Dogmom - loved the pics and the sign. I've taken to signing my emails - Uniboob. A little humor seems to make it easier for non-survivors to connect and engage.
I would love to be on the Friday chat. I've never used TeamSpeak, but I'm sure my husband could figure out how to get it to work. I tried the moderated chat this past Wednesday, and the moderator posted some awesome links as we were chatting away. She asked me to go first, which was a bit awkward, since I had never attended one of these. I actually got a little scared, since it almost sounded a bit like a competition for who had the worst symptoms. There was one lady at the end who I swear was in a full-blown manic episode. I have never known any human being who could speak for 2 minutes without taking a breath. I couldn't get the camera thing to work, which was just as well, as I might have scared a few people myself..lol. I liked your advice about giving myself some breathing room in terms of returning to work. The oncologist said it was fine with her as long as my employer could make accommodations, and I don't want to use up all my FMLA or STD in case the paclitaxel really kicks my butt. The infusion center is only 10-12 minutes from here, so it isn't a big deal to get there and get the shot. The nurse at first thought I was there for a bag of fluids, but when I told her it was just the peglfilgastrin injection, she said, "ah, so you just need the poke and go." That got a chuckle from the gentleman in the next chair over.
Bird, I love the chemocaps you gave the link for. Very Bohemian!
Haven't had a big crash yet with the A/C. Well let me modify that. Evidently, I was sleep walking after taking Ambien for sleep. My husband woke up to a rather loud crashing sound in the bathroom, and I had fallen. His biggest concern was how to get me out of the bathroom without disrupting the port site or damaging the mastectomy scar. I can't remember any of it but was not injured. I did get a bit nauseated yesterday and had a terrific migraine (not helped by the chemo meds).
Cat, did you get the summer house ready for rental yet? It sounds like it would be a tough job to make a dent in that much stuff. My husband always talks about his dream to build a "tiny home" out in the boonies with a goat and chickens. I could handle the goat and chickens just fine, and I might even be down with downsizing if only he could get rid of his old computer gear, boxes of unused cables, and assortment of man-toys. I made a mistake by giving him one shelf of the only decent closet, but he has entirely taken it over. I have a grand piano, and since it's the only thing I ever bought totally on my own, I would be loath to part with it (besides the fact that playing is very therapeutic for me). Maybe we could pack his saws, drills, etc. into the piano when it's not in use. We've been married for almost 49 years, but I don't know that I would survive being in basically a 400-square-foot space with anyone (save the goat, chicken, and our 3 cats). At least the goat could provide milk, the chickens eggs, but our cats only eat our cash!
Glad that we all survived another week of treatment. Slainte to all!!
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Bird, thank you so much for the link to that study. It's becoming clearer to me why my oncologist is suggesting the kinds of chemo, radiation, and hormonal therapy for my cancer. We may not live forever, but it looks so much more promising that we will survive many more days!
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