My Husband, My Life, My Love, My Family, My Cancer
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Hello all.
Been busy the last couple of days. Today staying in and doing stuff around house.
Reporting for pocket duty--Moomala for scans, Mara for results, Mae for surgery.
Boo- Glad you got a good MO and have a plan for moving forward.
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Thanks Candy. My scans were fine, still NED. CT scans are now going to be six months apart. Will be having chest xray as have had slight cold.
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That's great Laurie! For obvious reasons - since we seem to clones of each other - I am following your journey closely. I have a few weeks before decision making time between me, my MO and the new MO at Dana Farber. I see you've done Xeloda already. I believe my decision is going to be Piqray or Xeloda. We shall see if I'm right.
Today's hip MRI was loooooong. The tech had a bit of trouble getting a vein so that made things a little more time-consuming but who knew hip MRI's were that long! Then a dental appointment.
Tomorrow is nuclear bone scan and CT scans. I'm going to a new (to me) imaging office and they are not very streamlined. I will be there for hours and hours and hours. So show up tomorrow for pocket duty ok friends? The food was great today. Hopefully there are leftovers. We'll need them tomorrow
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Who walks home from chemo? This girl. Feeling really proud of myself. Would have taken longer to wait for the bus. Took about half an hour or so but figured little more outdoor walking will help my slight cold.
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Moomala, Glad your mri is done. The scans should be much quicker, hopefully. I’m in for pocket duty again, bringing some chocolate chip cookies, will try to be careful with crumbs.
Mara, Go girl! Walking home from chemo is an accomplishment. Do you usually have many side effects from the chemo?
I got a quick report that my mri shows much improvement compared with a year ago (dx) and liver mets are much smaller. Ct scans were showing this but each time I get nervous.
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Mara- Your mets is brain, right? Going on 4 years? Anywhere else? Wow, you are tough--walking home after chemo.
I would fear going to 6 month scans. My PET in Nov showed no uptake---still on 1st line therapy over 2 years out. We are planning scans in Feb (3 months) pending insurance approval. If they are ok, I worry my MO, and insurance company, may want to extend further studies to 6 months. I am happy I am stable, but I would hate to get too lax and then things change. I hope they keep me at the 3 month scan schedule.
Rosie- Woohoo for MRI report !!!!!
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Rosie, I usually experience fatigue and indigestion. Digestive enzymes have helped with that. My bloodwork also shows my beef kidney (yuck) and liver (double yuck) twice a week have helped as no longer have anemia. I only eat them twice a week. I think they have helped spur this energy on. I did not go fast but went steady. Planning to go to the grocery store soon for another walk. Just need to drink some water. The walking helps with the fatigue. If I spend a day without exercise, I am in a lower mood and just plain tired. Going to keep pushing myself along. It's been almost 5 years since dx'd with BC and I am still alive and moving. That is amazing given my type of BC is so deadly and agressive. I am lucky it also responded to chemo then herceptin. As I say I need to keep pushing myself off the couch sometimes. It can take half the day. Without anyone here, the pushing falls on myself so going to push harder.
I do mix both the kidney and liver in with beef or chicken with queso and black beans plus spinach. Hate the smell but can hardley taste the kidney or liver. Lots of fiber and mixing in cheese and queso, sometimes with tortilla chips makes it good to me.
I can also empathize with feeling nervous over scans too. Glad to hear about your improvement Rosie.
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hello everyone! it’s been a while since i have post but i have been reading. i celebrated another birthday this week and was so thankful to be able to see another one.
mara i can’t believe you walked home from chemo! you rock!
candy 678- i have been doing scans every 6 months for about a year and a half now. i know it can be scary but i like it because scanxiety sucks! i know that if i had a new pain ot symptom my oc would be on it. i guess it comes to hoe much trust you have iyour onc and your body. i do get pains that make me think oh no but i talk myself down and give it two days
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Hi Holmes !!! Good to hear from you !!!
I would rather do the scans (with the scanxiety) than not. It would cause more anxiety not knowing what is going on in there. When I was diagnosed, the liver met was 8 centimeters (size of baseball) with no symptoms, no weight loss or gain, good appetite, liver enzymes on regular blood tests were normal. I have MBC ??!!! Wow. Came as a shock. So I don't trust my gut to be able to tell doc "Hey we need to scan, I feel ____".
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Given the renaissance organ meats have had in recent years due to the paleo diet and the like you would think SOMEONE would have come up with a palatable way to eat the damn stuff. Like pre-ground into meatballs with other meat or made into taco or nacho meat. I can't deal with handling the stuff, but if mara wanted to come sort out queso N organs for me, I would totally be down for that. LUV QUESO - and I have to drag it home to the UK in suitcases. That's so cool your experiment worked! We have creepy Swedish liver pate in the fridge but Im not that desperate.. yet.
Good luck all those in the tubes this week - wishes for great hospital food, soft scanner beds, and decent rad techs, not the mention... CLEAN SCANS!
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Hello all
Philly I had acupuncture today and I always think of you when I go.
Waving hello to Holmes rosie24 Mae candy Mel, Sondra F
Moomala glad you’re mri is over and I’ll be in pocket duty again.
Mara can you make that mixture of organ meat and tacos 🌮 for pocket duty with lots of cheese and beans to disguise the unmistakable flavor of liver grit. Mara you are our chemo walking home hero. I sometimes feel strong in my mind but my body can’t pull it off.
Mae you always move right along with a great attitude
Booboo happy for your new MO experience. Sticking to your guns you got a big reward.
I’ll be on call pocket duty for tests and holding hands and hugging for scan results.
My long time friend is visiting for a week one bathroom is still a construction site so...
Take care all
Tanya
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'liver grit' is not a phrase I ever want to read again!
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Funny Sondra that you know exactly what I’m talking about! 🤣
Tanya
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Liver grit is about it though. I do enjoy the beans, liver and chicken or beef all ground up together. I sometimes put spinach in there and wheat bran for even more fiber. I usually split up the meal in about 2 to 3 portions but that is fine. I have also thought about combining a package of mexican rice, beef, liver with beans and corn. Queso and ground up tortilla chips as well. I could probably get a couple meals from that. They would be very nutritious as well. I don't like vegetables overall so being able to hide nutritious food is good. Sondra, I LOVE queso too. I have it quite a bit. The one morning this week, I had not had breakfast by 10 which is usually cereal but I was really hungry so I had a ground up beef burger with queso, spinach and chips in there along with garlic bread. Was really good. I have a very strange stomach these days. Oh well.
Candy, no cancer mets have been found from the neck down since I was dx in 2015. I am coming up on my cancerversary in Feb this year. 5 years if you can believe it. MO thinks it was in my brain all along, just too small to see. Brain met was 2016 and recurred 2018. WBR and local radiation in 2018. Nothing visible this year in my brain, no swelling either which is good. I know that will not likely last but I will take every good day I can, like all of us do. I have been very lucky truth be told when it comes to my cancer.
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This organ meat convo is cracking me up!
To add to TMI, that combo of food would DEF give me immediate diarrhea without a doubt it would have me running to the bathroom LOL!!!!!!!!
SondraF you seriously crack me up!!!
Tanya yay so glad you have found a good acupuncturist! That makes me happy!!!
I gave myself a cupping low back treatment today and it felt so good!0 -
Love from Philly, I have to take digestive enzymes so that must be what helps me out. Had the other half for dinner as well with more spinach and chips with queso. I will not eat the organ meats more than twice a week anyway. Going to hop on the treadmill and I should sleep well tonight.
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Micmel thanks for the skincare pics... not seen those brands here yet but will keep a lookout.
Mara well done you walking home...pocket duty is a given and you had lots!
Philly, mentoring another patient is a very selfless thing to do... I’m also doing some of that. Being kind is one of the things which makes us human and also makes us feel better ( selfishly on my behalf). That’s bloody hard when you are the one under the cosh, but it seems there’s always someone worse off at a particular moment. I’d like to think we have people being kind to us too.. I know I have and they are not always the people you’d expect!
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Mara and Rosie, Yay for NED and improvement 🎉
DH doesn’t feel well, tired and spaced out, I think it’s stress. I’m ok, ERS fixed me in their system and insurance should be reinstated tomorrow. Today was errands, laundry, haircut, TV. Next is dishes and dinner.
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Thanks Mae. Glad the insurance has worked out, one less worry off your plate. Sounds like you had quite a busy day. I hope you and your husband take it easy tonight. I can totally empathize with you and especially your husband as this is a major surgery. As I have said before, given your activity level and how busy you keep, I do not imagine that your surgery will be difficult. A lot of it is not being freaked out about the drill on your skull. You are in good shape and you will be fine. That is my feeling. I will be thinking of you during surgery and sending the warmest thoughts your way.
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Reading. Following. In pockets, out of pockets. CHeering, praying as needed. Mel, I got a sanding block out of Hub's workshop and sanded the horns and barnacles off my feet with aggressive grit. This winter, so dry, and washing dishes by hand has pretty much killed my skin. Tamoxifen is no one's friend in the skin department either.
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Runor, I need to use my emjoi on my foot calluses too. They are terrible looking for sure. I tend to be lazy about those things as I never remove socks, even in summer.
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I hear ya with the scary looking foot thing. Went and got myself a pedi, and the poor little girl who took care of me got quite the workout! She sanded and scrubbed and asked me why my feet are so dry and cracked. I tried to explain about chemo, but not sure she understood. I feel almost human again with the pretty color she painted my toes.
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I try to take care of myself, but my feet take a lot of time to make sure that they are ok. Or else they would look like Talon's. My toe nails have some slight ridges in them. That's attractive for sure. My skin is ok otherwise. Cracked feet soles hurt.
Mae~ you're on my mind friend.
Hello to everyone else. Hope we are all hanging in there today. windy day blustery winds, grey skies. Winter is officially has arrived. Even though last week, it was 65 here. Sum crazy shit.Runor~always good to see you here. I don't know who said it, but my socks rarely come off either.I just got done napping. Now to waste 7 more hours.
Mara~ just wanted to say I love how you support everyone here! You're an amazing woman! Hugging you my friend
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Thanks Mel, you all do the same for me as well. Hugging you all right back. I too am thinking about Mae, hoping the surgery goes well.
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hi my friends!
How is everyone?
I’m a little outta whack and I don’t know if I’m fighting off a bug or what’s happening. Just feel fuzzy headed and fatigued and my back has been sore.
I never do this but I passed out last night at like 9:30am and slept 12 hours.
I then (for the second week in a row) totally forgot about a patients appointment this morning 😭 I won’t be seeing them ever again. I did make it to both appointments (a little late!) and gave them extra time, but I know how annoying and rude that feels as a patient. I feel terrible about it but also I am self-forgiving as I realize that it is hard to run a small practice/business with MBC and all the medication side effects...let alone without it. I have never done this before and now I’ve done it two weeks in a row to the same person! Oy!!! So embarrassing!!! 😞🤦🏽♀️🤦🏽♀️😞🤦🏽♀️😞
In other exciting news, because I was naked at the time that the patient called me to ask me where I was, I jumped into my clothes and ran over to my office and forgot to put on a bra or underwear!
How’s everyone else’s day going??
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Oh Philly, that is a bad day so far. At least you got to the patient. Things happen and you are MBC and dealing with a cold and running your business which is amazeballs to me.
I felt the same at the beginning of the week. Have been sniffling more than usual, coughing but it is not productive and that is about it. Was really tired so forced myself into walking all week.
I am not doing much today, some laundry, some cooking of weird food concoctions in a bid to make chef boyardee ravioli a little more nutritious. In this concoction, I took a can of the ravioli, added a can of flaked ham, added some black beans that were ground up, taco cheese shreds, wheat bran and spinach. Cooked them all for 10 mins on 50 per cent power in the microwave. Let it stand. I can get probably 3 meals or snacks out of this besides what I already ate. Plan to have it with tortilla chips and queso in snack size bites as well. I don't know where these ideas are coming from as I usually am not experimental with food nor consider myself a good cook. I am good at following simple instructions. I have also been walking about 20 to 30 mins after meals on the treadmill too. That's it for me.
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Ah Philly - Freeboobin'!
Today I totally, HONESTLY, meant to come back from doing blood at the hospital to continue to work from home but man, when I got home I just wanted to lay down. So I did and woke up about two hours later... whoops! Oh well - try again tomorrow. I don't work anywhere stressful (with deadlines. Stupidity is another matter) and I didn't have any meetings so hey, its all ok. Other Half has had the sniffles and fatigue the last four days so I do wonder if I didn't get a bit of that.
Tonight I am doing Food Things - put in the online grocery order, reading recipes. I also started a subscription for a weekly vegetable box delivery from a company that collects odd-shaped veg from farms that would otherwise not make it to the supermarket and be plowed under/wasted. Its still good to eat, but just may not conform to supermarket plastic packaging requirements (seriously - why in the UK they encase EVERYTHING in plastic at the store just astounds me). I thought it would be fun to challenge myself to try new vegetables too. The box will show up Wednesday mornings outside our back gate like Vegetable Santa. I know we have a fox or two wandering the neighborhood - hoping he doesn't get to it first!
The website updates with contents when known so for next week we get rainbow carrots, purple sprouting broccoli, peppers, tomatoes, onions, sweet potatoes, leeks and... Jerusalem artichokes. Aka sunchokes. I have no clue what to do with these things but google tells me they are a great source of iron. Another article tells me they are also a great source of painful gas. So I guess it'll be Sunchokes x Ibrance. Our walls are pretty thin too - there was one time I came home from the pub having had a few too many Guinness and yeah - we could hear the guys next door laughing. Maybe this is payback for all those loud parties last summer they had in their garden.
I recently watched Cheer on Netflix, which was great fun as a diversion - really good and fairly emotional for a documentary. And now that Ozark season 3 is back on in late March... gonna rewatch season 2 to remember what the hell happened. Can highly recommend!
And in medical news - the right side neck lymph node, which has been swollen for as long as I can remember, is now not. I don't know when that happened but it had to be in the last two days or so because I tend to rest my left hand on my neck/chest when thinking. I kinda panicked for a second grabbing around on my neck wondering where the hell it went!
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Philly, lol no undies 😆
I am relieved to report that all insurance issues are resolved and authorizations are back on track. Now I can go back to thinking about having my skull cut open, ugh, what if the neurosurgeon sneezes during the operation?! Lots of thoughts both real and ridiculous. I am pretty calm though, considering.
Going to a favorite place for lunch tomorrow with my former work bestie/husband, then dinner at a friends who’s family is in town from Germany. I won’t be trying to speak much, I only know a few phrases and when I said them before, I was told that my German sounds similar to that of a Russian prostitute 😆🤣🤣
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Oh, and question for the ladies getting pedicures - I really need to get one because well, my toenails are a mess since I can't bend down to clip them and I would just like them to feel pretty. Do you ever worry about a nail tech causing a cut or introducing bacteria into your system? I was going to get one before Xmas and then thought maybe I should check on that.
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HAHAHA my friends! Yup at work in full commando mode!
And good news - when one patient leaves, it creates room for another. So that has already happened. Funny universe! Truth of the matter was that the patient who I was late to their appointment for twice, actually probably needs to have back surgery. I do not think that acupuncture is going to help them at this time in their health journey. I spoke with them about that - and that was ALSO part of why they will not be returning. I try to run an ethical practice and tell people the truth about their conditions, as far as I am able to see. Not that miracles don't happen, but I hate people wasting money where it is not helping them.
SondraF - so glad you don't have stressful deadlines and work issues. Thank goodness! I am so glad you could lay down and nap. I LOVE naps!! I take them whenever I can. Often time, doctors appointments leave me very worn out. Even getting blood drawn. I go for mine tomorrow. As far as a pedi - I think that if you make sure they don't use that crazy razor blade callous scrapping tool, then you should be fine. That happened to me once, preMBC. The pedicurist used that tool on a spot on my foot and it scraped too deep. I did get a small infection. Lesson learned. Those tools are actually illegal for them to use in the USA now. But not everyone adheres to the laws. Otherwise, as long as the place is clean and follows proper sanitary practices, I would not be too concerned. But I think it is wise to be cautious in any case.
MAE!!!!! YAY!!!! OMG so glad that got worked out. Whew! One less thing to have renting space without your consent in your head! Now you can worry solely about the brain surgery :-/ Ugh! But good to get at least one of those things off the list. I think it is ABSOLUTELY normal to worry about any part of the surgery. And I am so glad you have your friends to hang out with and help you either take your mind off it all or process it. I am so grateful you have amazing people surrounding you.
I don't know if this is any consolation, but at one point a couple years ago I had to consult with a neurosurgeon about a patient I was treating. The patient had a very rare disease that was related to the nervous system and I was trying to wrap my head around how to approach the treatment. The very, very awesome neurosurgeon told me, "Do not worry. You won't hurt them. I open up people's heads and work on their brains for a living and mostly everyone does fine. Humans are incredibly resilient and it takes quite a lot of stimulus to injure us." And so I jabbed the patient full of needles....JUST KIDDING!! But seriously, his words were so helpful for me to hear and a good reminder at how resilient our bodies (and brains!) are.
Love,
Philly
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