My Husband, My Life, My Love, My Family, My Cancer
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@kbl thank you for the update on sunshine99, I've been thinking of her and am glad she is comfortable.
@cookie54 whats up with that cinnamon chip loaf? That sounds fab, could you message me the recipe or link if its from a website?
Spent the day resting my hip flexors and lounging with the cats listening to the storm, working out our Christmas menu, and learning about Persian cuisine. 90 minutes of lymph massage really takes it out of me the next day, but we also do flexibility and soft tissue manipulation/massage so lots of junk in the body floating about waiting to be expelled!
I was just checking my chart because I didn't want to mix up my scan day again (and I was about to do so!) and noticed onc pulled my CA 153 number and made it visible, probably as encouragement as shes also been making sure I focus on the positives of the chest met. We almost never talk tumor number so this was surprising.
It dropped like a rock after I started Enhertu from 85 to 50 (I've never been above 100 this whole crazy ride), so bummed I got this stupid lung side effect, ugh. Whhhhyyyyyyy. Watch, some 30 yr old drug will be the golden ticket finally. Something must!
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Sondra-I am sitting here in my wearable blanket thanks to you. I got a cheaper Costco version that I had resisted on earlier trips but today I had to have it based on your reviews of the one you got. So comfy and warm. But now I need to donate my Snuggies-they are useless compared to this.
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Hello room
It sounds like many are feeling better and maybe looking forward to family time holidays.
Mara nice to know your name is Catherine. Sometimes I stay awake late watching tv shows. It’s like I have to finish and know the outcome. Oh well it happens.
Seeq I’m glad you enjoyed Vegas and congrats on grandchild!!!
Candy none of the medical staff truly knows the agony we endure mentally with this diagnosis. Since they ask how we’re doing they should be prepared for other responses that don’t include unicorns, rainbows and glitter.
I think a pet calendar would be fantastic! Our pets are such a comfort through this stage 4 diagnosis. Every night my granddaughter goes out at sunset to feed our neighborhood strays. I started trying to feed them earlier and they didn’t eat the food. They are hungry for the attention she gives them not food. She pets each of them individually and then feeds them. We all benefit from our furry friends.Hi Mel and Theo.
Thanks for all the sharing, tips and feelings. I appreciate you all.
Take careTanya
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Catherine/seeq - love the lake pic, living with beauty is such a gift.
Candy - congrats on stable. Living with uncertainty is not for the faint of heart… and yet it is what it is . Before my mom passed she used to say relax and accept, cause you have no other choice. Lol.. she passed in April and we just had her unveiling. I was not up to going due to the radiation treatment, but my sister sent photos and It was peaceful to visit the headstone and remember her via the pics.
Catherine/Mara - I love your get it done attitude and the daily love and peace you bring to it all. Even laundry! We share the love of cooking.
Sondra - I’m back on the 30 year old drugs Carboplatin with my radiation and soon to add taxol again, as my resistant tumor did not like the new ones Enhertu and Trodelvy …lol..so we’ll compare notes. Hope you’re feeling better.Tanya - love how your granddaughter cares for the strays, when I lived in a Greece for a summer I had a family of strays that wanted to just come and sleep by my side on the veranda, be pet and loved and eat of course, but it was the love. I’d forgotten about that 20 years ago now..
wishing everyone a lovely and restful Sunday, Igor and I are going to snuggle in and read a book.
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rlschaller, love Igor, similar to my Ava, tuxedo cat too.
I have my MO appointment today. No test results from her, probably just a weight check in and making sure nothing has changed for me at this time. Nothing has changed which is good, weight is the same for many months now, no loss but no gain either and bloodwork I am sure. That is it for today, next appointment Wednesday for Herceptin and Thursday MRI in the afternoon, busy but not a huge deal. Using Paratransit for all three appointments. Just easier and when I look at it, much less expensive than door to door service would have been in an UBER so I will stick with Paratransit.
Just trimmed down my hair with a head shaver. Washed and scrubbed gently, have to keep shorter, I have cradle cap and need to be able to get the med on the head, thinking this needs to be a regular thing and no more longer hair for me. That is fine, a lot of the hair is gone anyway and I do wear the wig.
Breakfast will be quick, ham, egg and cheese sandwich on english muffin. Make the egg separate and toast the english muffin. Debating whole butter or garlic. Not sure yet. I will probably get dressed soon and then make breakfast, no laundry needed yet, only a couple of cloths in there. Later may open can of lentils and use those for a bit with bacon and cheese as well. Put them in an egg in a sprayed bowl, make an omelet sort of thing and chop in with croutons, my favourite way to eat beans. I also need to remember to add a tsp of chia seeds, got a ton of those and quinoa as well, they get forgotten in all the food I have purchased lately.
Edited, long appointment due to wait and Paratransit on the way home was slammed and took a long time. Needless to say, I was starving so order Mcdonalds, junior size mcchicken and a mcdouble meal and I don't feel at all bad. Just looking forward to my meal.
I do hope everyone has a great day, in pockets for those who may need me as well.
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@mara51506 Have a look at the MooGoo brand shampoo and what they have for kids - they may have something gentle for you that will help resolve the cradle cap issue.
@chicagoan yay for comfort! I mean its a pretty basic idea of wearing a blanket and all lol - glad you were able to find one at Costco, you never know what they have in stock. What kismet it was right when I mentioned this Oodie thing!
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Love the cats pictures. I miss my cats. I always had one until my dear Salsa crossed over a couple of years ago. I don't have the energy to care for a cat anymore, and with our dog now, a cat just wouldn't work with automatic outdoor and us living with so many cayotes in the neighborhood. Sigh…
It is snowing today but it is light. I am on my way to see my PCP. He wants to do a med check. Weird, but okay. I always like someone who cares what all I take. Have a great day everyone.
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I heard an excellent sermon about worrying and anxiety yesterday but unfortunately the church doesn't make it's sermons shareable. It's based on Matthew 6: 25-34. The gist was that we all are prone to worry and anxiety, but our worrying about the future can't add one minute to our lives and can cause us to miss the life we have today. I just ran across a prayer today by Nadia Bolz-Weber on this same text with a focus on people's political anxieties. We cancer patients have a lot to worry about but let us not miss the joys that are available to us today. "Please help me not miss the good stuff because I'm worrying about the bad stuff." Peace be with you.
A prayer by Nadia Bolz-Weber...Dear God, You remember that whole “who by worrying can add a single hour to their life” thing? I could use a reminder of that right now. Took this photo a few days ago while walking along the river in Little Rock, Ar. I’m just rehearsing dread and practicing fear right now. So when I start doom-casting about what might happen in days to come, remind me that this day has worries of its own. Guide my hand to turn off the radio, my feet to walk away from my laptop, and my eyes to turn away from my phone, because none of that shit is healthy for me right now. With your grace, may we all recoil from hot takes as from a hot flame. And then give me the strength to do the next right thing in this life I have been given, among these people you love, in this place you created. I guess what I’m saying is, please help me not miss the good stuff because I’m worrying about the bad stuff. And if it’s not too much of a bother, could you, in your infinite mercy, also help everyone be on their best behavior this year at all our Thanksgiving tables? That’d be great, because more drama we do not need. Amen.10 -
@chicagoan Thanks for sharing such a great message.
rischaller Love Igor's piercing eyes, very handsome.
Hey Tanya Good to see ya! Hope you're doing well.
Mara Hope you're doing ok. I know you have a busy week, hope it's going smoothly.
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I'm going to be busy tomorrow and I don't want to miss wishing everyone a Happy and Blessed Thanksgiving. This group of wonderful ladies is absolutely one of the things I'm thankful for.
Catherine
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Oh my goodness so many wonderful posts and so much caring. This is our safe place. We all need a safe spot. It doesn't mean we can't converse confidentialy with others, it's just to quote a recent post "Hey, walk a mile in my shoes". Found a lab tech that is not all chit chatty, does her job quietly and respects my head space (as I like to call my many moods). How do you go about asking for the "good tech" without hurting or appear condescending to other techs and nurses? I've been open about being a very difficult stick and one tech gets testy and seems hell bent on proving her abilities. Another one gives it one go and then she leaves the lab to find the "good one".
Such a beautiful picture of the lake. It reminds me of Ontario lakes (been many years and can't recall the lake we fished on). Stunning views that makes one open their eyes wide to take in all of God's gloryious nature.
Oh Mara, found an easy item to perk up eggs, etc. Honey butter! It was so good on string beans we ate at a restaurant (along with small cranberries). It's a break from the usual beans with heavy back grease they like to serve here in the south.
KB, I see where you are off all meds currently. My mind may be slipping, but I don't believe I recall this. Is it a temporary reprieve or??? Thank you for keeping us connected with Carol. I hope you are doing well.
So here's my deal. Finished 10 days of Amoxoclavin 850 mg., twice a day. Started back on Ibrance day later. 7 days into this cycle and OMG, this damn colitis is back. My abdomen hurts, especially (sorry to use this squimish word, rectum). Burns, terribly. I called Urgent Care, who came to house again today. She feels Ibrance is the culprit and I'm gonna wind up in the hospital to have emergency surgery. So she took it upon herself to call my MO. His day off. She left message with his nurse, about her concerns. Then she left. No RX! Hope tomorrow at least gets me antibiotic meds, while they figure this out with the GI doctor involved, too. Gonna be a couple of rough days ahead. I'm still so weak from the last round. Just a thought on my part, but before I put it to the MO, anyone doing 2 weeks on Ibrance and 1 week off? With successful results?? Otherwise I'm either going to loose my intestines or have to find something else. Not eligible for autoimmune therapy due to MS.
In pockets for all you wonderful sweethearts. Be kind to yourself.
Laurel
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Happy upcoming Thanksgiving to my US family here. For anyone seeing family or just enjoying togetherness and a good meal, I hope it is good. For the single people or those who do not celebrate it, do something nice for yourself anyway.
I am up early, usual thing when having a morning appointment. It is below 0 and snow will be imminent and may stick, will pull out midsole cleats in case I need them. Not thinking we are to get too much snow but I will find out. I am doing some laundry this morning, using wee washer as other is pretty noisy and it is early. By 7 am may use the regular wash. I also want to wash the pants I wore yesterday, they have some light fleece properties as well.
I will vacuum as the morning goes on. Thinking I will make an egg, ham and bean breakfast that is heated in the microwave first in a sprayed bowl then chopped in with croutons and shredded cheese. Will come out like a dry ground beef texture. Heat cheese and other mix an additional 45 seconds. Adding a binding agent after. I will be careful not to overfill as well, bigger is not better but I do not want to be starving after the Herceptin. I also plan to keep using the contour makeup I got from Sephora, I like to have a little definition in my face even though cheeks are becoming more prominent as I age. I also did wind up clipping hair the other day as a defence against against the cradle cap. I am also using a heavy duty moisturizer a couple times a day and vaseline at night, very helpful for me. It still itches but not as bad.
I do hope all have a good Thanksgiving whatever you may be doing, if alone, do something that you enjoy anyway. In pockets for all who need me as well. I only have this appointment and one more Thursday afternoon then I am off until next Thursday for MRI results with RO. It really is not that bad to be out and about a bit with rides to and from the hospital dropping me off at the door. 6.50 round trip is very good and better than UBER which would be around 30.00 round trip by the time tip is factored in.
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I've had a really good experience with folks in the medical field. I find them very kind and gentle. I often make jokes. For example, last time I had a bone scan, there was a big sign on the wall to let personnel know if you were pregnant. When the techs came in, I said, Oh hey, I'm pregnant. I am obviously an old lady, so I got a good laugh, and declared it a miracle birth. I often chat with them about their lives. I know, for example, that one of the people who does the blood draws is suffering from rather severe rheumatoid arthritis, another has a disabled kid. In other words, I see them as people with lives, with their own struggles, and I honestly can't imagine being a doctor who is dealing with tragedy on a weekly basis. They are seeing hundreds of patients. Is it always perfect? no, one time I had a blood draw that was quite painful, but it was obviously that the person was rather new. I've been in much worse situations with groups of people, and these medical folks have given their lives to helping others, even if they may be clumsy or in a bad mood some times. In other words, human.
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To all who celebrate Thanksgiving - I hope you have a wonderful day. I have had mixed experiences with medical staff - In the main they are gentle and good at what they do - there have been some spectacularly bad outliers though. But they all add to my growing collection of stories about medical procedures that are in retrospect very funny - just not very funny at the time.
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Happy Thanksgiving to all here who celebrate. I hope you are all well enough to enjoy a good dinner with family and/or friends. And if you are alone that you have a yummy treat. We are going to my BIL's house for traditional turkey dinner. I told my SIL I was unable to hostess this year and since she is newly retired, she jumped on it. Of course I am bringing a couple of things but it is nice to have family around. This is the reason we moved back to Colorado! We had a snowstorm last night and the freezing wind is blowing too hard to shovel. It will continue to snow until about 5:00 and we are at out high today at 26°. I am thankful it will be clear and we will warm up a little tomorrow to 36°. Just in time to travel across town…
Irish, so sorry you are struggling so much again, still! That pain is all too familiar and I pray they find a solution for you fast.
Most of my medical helpers have been kind. Makes the bad ones stand out! I had to drop off paperwork yesterday for the foundation that provides my Verzenio for free. The hospital worker in charge of the paperwork goes out of her way to meet me at my car to accept the paperwork and checks it right there while standing in the lot. This is twice she has done this. So I give a shoutout to Phelecia for her kind work. I will try to send a kind note to the hospital for her too.
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Mara Glad your doing well and your week went pretty smooth. In your pocket for your MR tomorrow.
Irish Sheesh I'm so very sorry to hear your struggling again with your bowel. I can't even being to imagine your level of frustration through all this. Big hugs your way.
To all the lovely ladies here I feel ever so thankful and blessed to have all of you in my life. Happy Thanksgiving enjoy your day!
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Just got back from getting my fulvestrant shots (yuck!) and chiming in here with my absolutely good wishes for a wonderful Thanksgiving to all! Sounds like some of you have some nice plans for sure. I went with my sister-in-law and her husband last Saturday to a nice restaurant in a nearby town on the water. We had a nice meal and called it our "Thanksgiving" since we won't be able to get together tomorrow. I really don't have any family around, except for my brother, and I had planned to get together with him, but he now tells me that he is not feeling that great and would rather just stay at his retirement place solo, and eat with the people there. (I'm really worried about him.) This means that an old childhood friend and I will now go to a nice restaurant here on the water and enjoy an early afternoon turkey dinner. Her family decided not to do a big get together, so she too has the day free. The place we are going had been all booked up when my sister-in-law tried to get a reservation there last week, but they now say they have some openings, so my friend and I were able to snag a spot. Looking forward to it, although sometimes I am just here in my apartment by myself and it's not too bad. I can go either way and be happy.
I will be thinking about all of the things I am grateful for and all of you will certainly be at the top of my list. No one else can "get it" like you all do! Thank you all for being in my life.
Mel - Have a wonderful day and enjoy your family and Theo! Happy Thanksgiving.
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@irishlove So sorry you’re struggling. I hope they can get you the antibiotic quickly or you got it today.
I always read here but rarely comment. I appreciate you thinking of me. I am off all treatment by choice. I had gone through all of my pill options and tried Enhertu for two infusions. I had horrible side effects and decided no more treatment. I don’t want to try a different chemotherapy. I thought about it long and hard, had many tears for a few months, and finally came to the decision that I wanted quality over quantity. It will be 11 weeks this Friday since I stopped. I am not on hospice as of now. I’m still able to eat. I am having some dysphagia, which I had when I first found out the mets were in my stomach. That’s the main thing right now. Sometimes it feels like I’m going to choke, but not on food. I can still eat and drink okay.
I always think about BooBoo and how she stopped treatment, and I believe she made it at least a year. I’m not even quite sure it was the cancer for her cause of death. I’m at peace with my decision, and as hard as it is to know my family will suffer, they are supportive of my decision.
I hope everyone has a wonderful Thanksgiving. I will have my daughter, son-in-law, and grandson for the night and my husband, of course.
Hugs to you all 🤗
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I wish everyone an enjoyable day. My DH is in memory care and DDs husband is overseas so we are going to a potluck at a neighborhood center. I think it will be fine with people to talk to so we won’t feel alone.
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I thought I might want to be alone this year for Thanksgiving, but think I'll go to my friend's place for a small gathering, they said they'd put the dog show on, hurrah! This time of year hits hard emotionally without my DH, but am trying to not withdraw too much.
Went to see a matinee of Wicked earlier today, and thoroughly enjoyed it! Also ordered a couple of dresses that had arrived when I got back home, and I just had to laugh when I tried them on - how did this happen that I'm no longer 20 and cute anymore?!? Lol. Sending them back.
Happy day of gratitude and thanks to all of you wonderful people here. ❤️
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Stopping by quick to wish everyone a Happy Thanksgiving - we aren't doing much as I stopped doing the meal when we moved to the UK, but I still miss family and tradition this time of year. I have a CT lung + hip at noon in the city location (near Oxford St so I can at least see if the Christmas lights are up). Hubs is going to locate a Christmas Lunch sandwich for me while he returns a few items to Uniqlo lol - Christmas lunch type food is very very popular here and is essentially Thanksgiving in sandwich form - cranberry relish, veg of some sort, turkey, stuffing, mayo, bread. Works for me! Ill call home tomorrow as parents werent sure when they were eating and Im not sure how much this scan is gonna take out of me.
As for medical staff, we get LOADS of folks from all over the world and I would say for the most part they are 98% caring and lovely folks. I love talking to find out where nurses/staff are from - Ive had such answers as Sierra Leone, Hong Kong, Kurdish Iran (via Turkey), and Swaziland with her click language name. You learn so much from people and they are just happy someone 'sees' them and their culture, that they arent just more meat for the NHS grinder. They also tend to help a lot of older British folk and middle eastern types who can be rather uh, selective in their view of the world and may not treat them as well either. Oddly most tend to think Im South African (wut?) or Canadian but rarely American.
Wonderful to see you kbl, I think of you from time to time and how you are getting on. Glad its been a positive time!
@chicagoan - I actually went and looked up the entire chapter and read through it. Im not a religious person, but thats not to say its useful to discard anything religious related. A very thoughtful reminder as I was certainly getting anxious about things I cant control and the future.
@irishlove I hope they can get you feeling better for longer soon, what a pain in the ass having colitis coming back right after you just finished ABs.
Have a lovely day everyone!
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Wishing everyone a Happy Thanksgiving. I don't have any plans for the day. Can't eat too many different foods anymore without paying for it later GI wise, so no "feast" for me. Hope you all have a good day.
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Happy Thanksgiving to all who celebrate today, enjoy your day no matter what it looks like. Any leftovers may be left in my pocket. 😹
Yes, today is my MRI which is fine, gives me time to get some chores done. I admit this week has been quite tiring with all the appointments and such, today is a break with the afternoon appointment. I am presently doing more laundry, already did a cursory vacuum of apartment, takes about 3 mins in all rooms, still are some nooks and crannies needing a sweep as well and I want to wear same pants as yesterday to the MRI so will be washing those later. If washing stuff that is not particularly dirty, run short cycles of 3 mins to freshen up my warmer pants. We are getting quite cold, time to pull out the fleece. I did order some Walmart including bags of ice melter, I keep my own supply on hand as the managers are sometimes pokey about it. Just did a Walmart delivery with some of the frozen pasta, 2 bags ice melter and litter deodorizer which was much higher priced on Amazon.
I did order more frozen pasta and shredded cheese as well, spent a lot BUT two bags ice melter, the blue melter. The order is on its way now but different flavour of cheese, told the shopper what to replace with but did get tex mex. I have two bags of alaskan ice melt, fits neatly in my recycle corner as well. Although price can be high, I do find they get my order to me within an hour or so which is worth the cost of delivery. Now will be playing tetris in freezer again but that is nothing new and no longer bothers me. I am mostly glad to have the litter deodorizer and bags of ice melter here. Freezer tetris was pretty successful, got most items in the freezer though it is taped up still.
I do hope everyone has a good day and Thanksgiving and in pockets for all who need me.
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I just signed in to wish everyone a blessed and happy Thanksgiving. I am so grateful for the care and support I've received from you all, through tough times, pain, tears and uncertainty, which nobody understands quite well as we do. we celebrate our joys no matter how small, from sharing beautiful photos of scenery and adorable handsome pets to exchanging humor, these moments are so impactful ❤️
I'm also thankful for my IR, the only physician willing to take on a high risk procedure, giving me a small sense of victory over cancer, even though I'm still not 100%. hopeful I'll qualify for a trial I've placed so much faith in, and that the full-attitude clinic will accept my less-than-perfect insurance for the trial, that would feel like a miracle itself! praying my MO will take my case as seriously as it is- amen to that.
KBL thank you so much for sharing the news about Carol ❤️9 -
@kbl Thank you for your honest words and brave post. We all love and support you here. May you be able to cherish every moment for a long time.
@wren44 Enjoy your meal with your friends new and old. We will enjoy a small family gathering as opposed to the 50+ people my family used to hostess. I couldn't handle that anymore.
Happy Thanksgiving everyone.
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Today I am thankful for:
- A day with low low pain. Seriously, it was a great day which was good because I had to walk halfway around the square to the clinic because road works meant the Uber couldnt get there. But I had the strength to do it and not be in raging pain after
- An easy CT scan (fast, low bolster under the legs even!) at the really nice clinic, even if traffic was terrible - right through Mayfair and Soho
- My Christmas Lunch sandwich which was just enough Thanksgiving flavors to make me feel at home
- My husband, for being there to hold my hand when Im having pain spasms
- And everyone here and my hospital team, both the usual nurses and the ones I encounter, for keeping me going through all the awfulness of this year
Unfortunately - I was on a call with my therapist and phone rang twice with Private Number within 15 minutes so I excused myself to pick up on the second call and sure enough it was my MO calling that the CT scan showed I have another pulmonary embolism and she needed me to immediately start 10mg of Eliquis 2x a day for a week. I have no breathlessness, O2 loss, cough or anything other than some pain/itchiness maybe across my collarbones which I figured was from walking more (on the canes) and some pulling on the surgical dressing. I wear my compression stockings, have been moving more than ever the last month and yet NOW I get this? Where is the picture of Sideshow Bob and the rakes again?!
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KBL, that you for the update on Carole. Carole, please know I am happy you are feeling better and living your life for yourself. While I miss you directly, please know I am so hard in your pocket sending my love your way as all of us are.
Sondra, I am sorry about what your are going through at this time. In your pocket lending support as well.
MRI went well, both rides on Paratransit good. Glad all appointments are done. When I got home, I found that my freezer had burst free of the tape, door was mostly closed so it is fine but really illustrates that I need to make clearing the other stuff a priority and map out things I want more clearly. I know I like frozen pasta to add my other stuff too so Just need to have enough room to store pasta in there. I will have to be quicker about using stuff up as well. Oh well, it will happen someday.
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@intolight Thank you so much. I am so grateful to have had my daughter, SIL, and grandson for Thanksgiving. I had a wonderful day and made some delicious food, even though I’m a horrible cook. Lol. It was really perfect, and I needed it. I hope you and everyone here had a great Thanksgiving.
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Hope everyone had a wonderful, meaningful Thanksgiving Day. The foods sound yummy and the memories I can picture of each of you and your families and friends.
Sometimes I believe this may well be my last holiday season. I'm trying to hold onto each and everything that occurs. @kbl your strength amazes me and I hope you will find love and peace each day in your journey. @sondraf My goodness you just can't catch a break on these embolisims. Hope doc can correct that ASAP. @mara You are a spitfire for sure. Wish I could tap into some of that energy.
I do want to make sure that you all don't think I'm a pathological complainer, especially about the medical field. I love most of my nurses and can't imagine the stress they are under. Sometimes the nurses are the only people that I have interacted with (other then DH) that day. Actually most of the time. I like to live vicariously thru them, enjoying their stories about life, children, travel etc.
We use to host large parties in our home and would bring home people that were struggling for housing/food, etc. I was very poor as a child and grandparents became our saviors on earth. Since DH was a police officer for close to 40 years, he would do background checks first (that's no longer allowed) and call me to set extra places at the table and get the guest room ready. Some had young children. That was heartbreaking. DH would help them find work and put in a good word for them. Only once did we get "taken" but that's the price you pay when you put your heart out there. As we had gotten older, we turned to rescuing special needs dogs. Accumulated cats, too. Down to two rescues now as they are seniors like us. I am thankful for all life's lessons.
Laurel
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