My Husband, My Life, My Love, My Family, My Cancer
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Good evening all. It's so very devastating to hear we lost Pat (Sadiesservent). Her posts were always supportive and the love of her dog, aww.
Welcome to new folks and here in your pocket for support. I viewed the posts and do see very few of us are stable. We all need a break.
Saw a neurologist for all of 8 minutes. He kept looking as his phone and didn't even bother with a physical exam. He introduced himself with a hello and I hear you are suffering headaches. Geez. Obviously he didn't bother reading my medical forms. I said "yeah a headache and oh 22 years of MS". That got his attention. We talked about my concerns and he ordered an MRI of the brain only. Thought he'd consider the spine and or a spinal tap, but he didn't. No offer of steroids either, which would help me. The spine pain is at a 9 even with gabapentin 300 mg. The head isn't painful, it's pressure. He also ordered an EEG. Waiting for the imaging center to call. And I am on the ledge. It's time for meds for anxiety and or depression.
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Oh Sadie, so sorry you're gone. I will always remember your kindness when I first posted a year ago and will think of you and your love of flowers every spring.
Goldens
Congratulations on your 4 year anniversary. May it last a long time.
Mara
Happy you got a good night's sleep. Isn't it amazing how restorative that can be.
Corduroy Mouse
As others have said, welcome to the group that none of us want to be in. We are here for each other no matter what and I believe it's the best thread here.
You must feel as though you have whiplash after your rapid change in diagnosis. There are some members here who have experience with brain radiation. Illimae is particularly knowledgeable and can answer questions.
Happy Anniversary and here's to many more. You and I must be of similar age, as my DH and I will celebrate 48 in October.
Emac
Glad the port placement was easy. I admire your determination to take on Taxol along with Piqray and in your pocket for the duration.
Irish
So sorry you had an unprofessional neurologist. Hope the brain scan provides some useful information. I am also on 300mg of gabapentin 3x/day, as well as celebrex and I still have spine pain. For what it's worth, my physiatrist (who I love) describes those as minimal doses. I think at one point you mentioned having side effects from gabapentin and I fortunately have none, but I have been taking it for 3.5 years.
In light of everyone's current struggles, I feel somewhat guilty posting that, after a roller coaster ride since my stage IV diagnosis last May, I am currently NEAD. Still bone only mets and scans have been pushed out to every 6 months from every 3.
Knowing, as we all do, that this can change at a moment's notice, I am racing to do as many bucket list items as I can cram in. For decades I said "Someday I will..." - well it's "someday" until the scans tell me otherwise!
Hugs
Eleanora
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Well, I called OT and she came for a visit today. Said a lot of encouraging things. She agrees it was likely the heat that caused the issue of getting out of the cab on Wed. She disagrees that I need extra care or a care home as when not overheated. I did get down on the floor twice. Little hard to coordinate but I just did it. Used my yoga mat, did fantastic on the first push up to my feet. Rested, got back down on the floor, second time was harder but did it. She wants me to do short bits of exercise, 10 mins per hour, can be 5 minutes twice, that sounds good. Showed her Paul Eugene as well, she liked it. She also filled out the paratransit form, may take a few weeks but it will come and make my life easier.
I mentioned the suggestion of my SIL who is looking out for me of possibly needing to live in a facility of some sort. OT shot that down noting I look after a house and cats and pay bills, I just need to take it easy. OT felt the same as I do that my brain was not functioning right from the heat. I am pacing myself as instructed, five or 10 mins at a time. Pacing indoors, even in the hallways, they are not busy. She told me to keep telling myself to pace myself. Still doing bridge pose in my bed, I hold it for 5 seconds and do it 10 times. I also like the leg lifter I picked up as well. Will also practice lifting leg really high and holding. As far as getting to the bus stop before paratransit kicks in, she suggested walking for 5 mins in warmer weather (not super hot) and gradually building up more of a tolerance.
This comment is a mix, yesterdays post I forgot to send and today. Huge laundry to get done. Unsure what I want to eat, running low on cheese and not time to order big groceries. Might have to try a bus first thing tomorrow. Breakfast wise, thinking beans chopped up, an egg. Loving it poached in the wee fry pan. Might cook up a frozen hotdog and chop it up to put in beans as well. We will see.
Hope everyone has a good day, raining here but has cooled down some, not so hot.
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Once it clears up, going to try the grocery store, closer stop, transfer to another stop that takes me right up to the store and use an umbrella to keep me out of the sun, possibly a neck fan as well if needed, we will see. I keep forgetting bus transfers to get me to the store I want to go to, not nearly so much walking except around the store and protection from any sun. Not going to be hot today so we will see, still staying out of the ridiculous heat though. Once Paratransit comes through, it will be good.
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Eleanora, don't feel guilty for posting good news. We all love it! I have been NEAD for eight months and still struggle with other issues. We all know the fight doesn't end as it also means the meds don't stop.
Mara, so glad to hear you are able to get up off the floor. You encourage me to exercise more and your bravery to take the bus is also encouraging.
Irishlove, I am praying you can find help for your pain. Sometimes we just want to shake the doctors so they will listen!
Emac, glad the port placement went well.
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emac Happy to her your treatment is underway and fingers crossed that it will kick butt!
eleanora. Congrats on NEAD! We all love to hear positive news, gives us something to hope for. Glad to hear your planning bucket list activities.
Mara Paratransit will be a great help to you especially on the bad weather days. Your OT sounds wonderful.
Irish Sorry to hear your new neuro visit wasn't as you were hoping for. At least he ordered the MR, some of these doctors really need an awakening! Pisses me off but yet when it's them or a family member they expect VIP treatment. Hope meds help to relieve your pain and anxiety/depression. Hugs.
Wishing everyone a peaceful day.
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Thank you to all for a warm welcome. I think you're right…this thread is just the exact place I need to be; a blend of struggle, hope, and experience from compassionate souls like yourselves. Thanks for posting both the good as well as not so good. Hope is wonderful, but reality is equally as valuable as I look ahead…one step and one hand hold at a time. 😏
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Intolight
Congrats on 8 months of NEAD!
You're right. Even in NEAD, I'm still on the meds, still have back pain and GI issues from Kisqali, although those are tolerable. On the bright side, my mobility is good and energy good with an occasional slow day. I am retired and have had the gift of raising my children to adulthood. As someone else on here once said "I am counting my blessings even in the middle of a nightmare."
Hugs
Eleanora
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Irish, REALLY??? I was really hoping this visit would start to move you toward getting some answers.
Eleanora, we will always celebrate our sisters’ NEAD status. No guilt here.
Mara, I’m glad your visit with your OT was positive.
I walked to the store this morning for a few things. It was an effort, but I did it. I’m worn out but will get some rest today so that I can go to our neighbor’s birthday party. Did I mention that we have the best neighbors ever? We love spending time with them.
I added another pill to my arsenal – Pepcid AC (or what the generic name is), 20 mg to be taken at night. If this doesn’t work, we’ll try Flonase. We’re still not sure the cause of the cough. Aspiration? Reflux? Post nasal drip? (CANCER???) 02 sats went down to 89 last night. My usual is 97-ish.
Carol
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Sunshine99
Very impressed that you walked to the store and back. I'm sure that was a real effort. Glad that you have wonderful neighbors. Be sure to rest up for the party. I've always been convinced that birthday cake has magic powers of healing, so have a second helping.
Flonase is the only thing that works when I have seasonal allergies and I hope it helps you.
Hugs
Eleanora
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@corduroy mouse Hi there. These folks are the best. I hope you find the support and encouragement we all need. Your b.c. journey to date had to be overwhelming. They always say once you can get a treatment plan, you will feel taken care of and be able to move forward. That was a scary beginning and I hope the future holds kinder treatments and good results for you. Keep visiting these ladies (and sometimes gents?) to find Mel has the most inviting porch (and probably the largest).
@sunshine99 I find that protonix works very well for me for acid reflux. I forget sometimes to take it and boy am I reminded, especially at night. Have you tried one of the sports bottles of O2? I do when I feel short of breath and it helps. I am so happy you have great neighbors. Gosh I found out how wonderful mine were when I became sick. Enjoy that birthday party and if it's chocolate cake, will you have an extra serving for me? lol
@eleanora Thanks for giving me support. I think I've adjusted to the gabapenten as I don't feel so dopey. I've decided on the 100 mg at lunch and the 300 mg at bedtime. Aleve and Tylenol just don't work. and @intolight Congratulations of NEAD!!! Celebrate the win and please do not apologize for it. We all pray for just that type of response. These meds sure do ask a lot out of our bodies and what choice do we have? I tell myself to suck it up buttercup. Doesn't work very often.
@cookie54 I agree with you about their expectations. I suppose it's too much to ask for out of the younger doctors to display some compassion. I get the impression his business is all about making money. He does surgery, pain management, yada yada. The office was packed full of older folks and rap music was blaring. I doubt I'll ever find someone as compassionate as my GP and MO in the future.
@mara51506 Oh I like your OT. You really keep moving along and I admire your daily planning so much. Glad the heat has left up and hope your transit pass comes thru asap.
@emac877 So good to hear that you are now on treatment that is tolerable and your port is healing nicely. May this treatment plan knock back your lung progression to oblivion!
Hi sondra and illimae and mel and golden (happy anniversary) and dodgersgirl and shanagirl and wenweii all that I may have missed. You are so valued and appreciated. illimae was kind enough to help me calm down as I worried about this neurological attack as being more then MS. I haven't had an MS attack to this extent in 7 years plus. It's atypical MS. I don't understand the moving around of the pressure in the head and the numbness today is cheek and mouth area. Usually with MS it's numbness one sided (For the most part). Base of spine still burning over that other cheek and back of leg. I get to see my MO Monday and maybe he can expedite the MRI appt. and listen to my concerns/fears. I can't help but thinking with MS attacking the mylein sheath on the spinal chord and crossing the blood brain barrier, that lets me more vulnerable to spinal chord and lepto cancer. I don't know that for a fact, but wonder.
I also wonder if meds are creating additional problems. Can't help but think Faslodex has now really sucked up the estrogen in my poor brain and wonder if it can cause some mental health issues. Found myself struggling with this mightily the last few weeks.
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Reading along but just so “out of it” today so have to pass on a better post than this one. Really, really tired today. Just want to sleep.
Last week DH and I celebrated our 47th anniversary with a dinner from KFC. (I can’t dine out any longer due to GI issues from chemo and I can’t cook any longer as I can’t climb any stairs and kitchen is upstairs). At least we are still both here. That is what matters.
Waving to you all. Know that I follow all your posts and appreciate everyone sharing. Keeps me from feeling alone.
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dodgersgirl -Happy anniversary! We celebrate 45 next month. Either way in this day and age it’s a long time to be married. May you share many more years together!
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@goldensrbest — thanks!
Happy early 45th to you next month.
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Dodgersgirl and Golden's
Happy Anniversary to you both! 🎉💕
Forty+ years is a great accomplishment. May we all celebrate our 50th.
Hugs
Eleanora
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Forgot to add that since my diagnosis, I celebrate every occasion or positive news, no matter how small - although I don't mean that anniversaries are small!
Everything from an ice cream cone or small bakery treat to a new book to a trip to somewhere that's on my bucket list. As Mel says at the very beginning of this thread, we are forced to experience all the terrible parts of this disease, but I refuse to ignore any small bit of positivity that comes my way.
I wish you all a good nights sleep and some happy moments tomorrow.
Eleanora
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Dodgersgirl - Happy anniversary to you and your hubby! KFC sounds perfect if that's what you both wanted. It's the company that's always most important. Happy early anniversary, Goldens! We're a little behind you with only 36½ years.
Emac - good to know you are started on a tx plan. I hope the double whammy of taxol and Piqray are not too hard on you.
Sunshine- I'm glad you got out for a walk today; sometimes it's the perfect pick-me-up. The farthest I walked was up the hill to the mailbox. It's too stinkin' hot for anything else. The weatherman says it's only going to get hotter next week, then cool a bit, and maybe get some rain. It was this time last year that we ran away on a last-minute Alaskan cruise. We won't be cruising again this year. Maybe next spring after DH's second knee replacement is healed up well enough.
Corduroy Mouse - Welcome! This is truly a great bunch of ladies.
So sad to have confirmation about Sadiesservant. She is already missed. 😥
Waving to everyone in Mel's Living Room, even you folks lurking in the background.
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I was hoping she was just taking some time off the boards to get stronger but it was too long that she was not here. My condolences to her family, friends, Sadie and all of us here who loved her so. She is flying in peace, no illness, pain or sadness.
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Sorry to learn of the passing of Sadiesservant. Condolences to her family. Sigh.
@seeq - thanks for the anniversary wishes.
@corduroy mouse - welcome here. And sorry for your recent diagnosis. Lots of helpful and encouraging words shared here. May you find a treatment that works for a very long time.
@emac877 - glad port placement went well. Fingers crossed your new treatment plan kicks C’s butt.
@eleanora — me, too. I celebrate small things with ice cream! I keep Klondike ice cream sandwiches in my freezer. And we live close to Dairy Queen, Baskin Robbins, etc so DH jumps in the car when treats are called for!
Hoping things will go well for all of us today.
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Dodgersgirl, missed the anniversary, Happy Anniversary to you both.
This morning is unusal. My washer STANK, it was awful. Apparently there were a couple of cloths left in there and they smelled very mildewy. I am on my third wash of stuff to remove the smell. First was vinegar, then baking soda cycle. Finally, put a bunch of enzyme in as well. That stuff takes care of the cat bot next to me. I did all this after wiping out the washer. No vinyl to deal with so that is good. Will not dry it til it smells better for obvious reasons. So gross. After 3 cycles of the cleaning stuff, it smelled normal, wound up putting my mix of fabric softener and vinegar I normally use. 1 part fab softener and 4 parts vinegar so laundry does not get dull. Drying now. Need to do next load soon.
Was going to go to the grocery store this morning, think I will put that on the back burner til tomorrow, buses are on a less frequent schedule. Just doing PT, breaking down boxes and money making.
Breakfast is a bit of everything at once, small amounts of each. 1 egg, 1/4 choc milk, 1tsp of peanut butter. Follow that with chopped beans and wheat bran, 1/4 and finally pancake mix, should be pretty good. I find the pancake mix mostly hides the taste of things. Melt butter and add a bit of syrup. Big calorie meal but today is a cheat day. Not sure what other meals will entail.
Hope everyone's day is good.
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Made the pancake mixture with everything except the peanut butter. Though today is a cheat day, I don't need to be ridiculous. Put it all in the magic bullet, including the pancake mix. Allowed it to thicken up, cooked in the egg mcmuffin maker. Added a bit of butter once it was cut up and some buttery syrup. It looked like a thick brown bread. Plenty of protein with the beans and egg as well as the bit of milk. No real chocolate taste or egg, beans were not detectable, just like a hearty pancake, delicious. Going to include more savoury dishes as well, can put anything in it. Super good.
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Sending love out to Sadiesservant and her family. May she be at peace and her family comforted.
Corduroy mouse, welcome here. I noticed we have IPLC (pleomorphic lobular) in common, who knew how many subtypes of breast cancer there were until we got one! Dr. Google, who is a quack, has very bad things to say about IPLC, scared me very much when I was first diagnosed with it over three years ago.
Love hearing about the anniversaries, it brings back lovely memories of my sweet husband. It's funny how some folks don't want to mention things like their wedding anniversaries to me since I lost my husband (as if they're going to remind me that he's gone or something) but it brings back good memories when I hear about others.
Going to have tea with a friend today, then stop by the local coop for some good eats.
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sf-cakes,
I read with interest your mention of your diagnosis IPLC (pleomorphic lobular) subtype. My original diagnosis was both classical and pleomorphic, a detail my MO has never discussed with me other than to say lobular comprises about 15% of breast cancers. I never looked into the differences between pleomorphic and classical until very recently. I don't remember if I've shared a comment with you in the past about lobular? Lillie D. Shockney RN etc, recently made a comment on an article about Genomic Complexity that there are "thousands of subtypes of breast cancer". Over whelming. Hope you enjoy your tea with your friend this afternoon. Sounds relaxing.
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My deepest condolences to Pat's (sadiesservant) friends and family. While it isn't surprising, it is deeply sad, and I so wish she was just taking a board break. She loved Sadie so much and was so devoted to her. I know she was very worried about what would happen to her if she passed away. Does anyone know if she found a trustworthy family/friend to adopt her?
For those struggling (my gosh there are so many right now) please know I am in your pockets and you are constantly on my mind and in my heart. Please do reach out if there is anything I can do for you at any time. It would be an honor to help you in some small way.
For those celebrating…yay! It is always heartwarming to hear good news and celebrate milestones with you.
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Weninwi, so many subtypes! I had read a couple of years back that pleomorphic lobular may respond better to immunotherapy than other subtypes, am keeping that idea in my pocket for when the time comes...
Tea with my friend was super delicious, she made it with almond milk and I'm probably going to be wired tonight. But grateful for my friend and that I feel generally okay. Good night to all
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@cm2020 - I think she mentioned finding either a new home or a rehoming ranch type situation for sadie. I think there were some other complications though with dealing with an aged mother that were additionally challenging.
So sad to see confirmation that she has passed on, always helpful and encouraging.
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Sfcakes, glad you enjoyed tea with your friend, always good to see people.
Today is a busy day, money stuff for extra groceries, still like stuff purchased thru surveys or mini games. Nurse coming for regular visit. One thing bugs me is it is not regular. I had the nurse on Friday keep hanging up and no available number to call them back but I digress. That visit, 5 min marches in between, if I get 20 mins, will be happy. PT going well, I love my bridge pose in the morning on the bed. Just do 10 and hold 10 seconds. Not lifted as much as I see in the traditional pose but it feels good. Lots of box breakdown for large recycle and a bag of garbage. The laundry with the mildew smell came out wonderful. Had to wash first in enzyme, the kind for the litter box, next used some baking soda, lastly used vinegar and then ran them through my regular cycle. They smelled wonderful after.
I am enjoying things combined with pancake mix. Not sure if doing it at breakfast but at least one meal will involve a hashbrown, beans and small amount of wheat bran chopped up. Possibly some olives as well as an egg. Prepared in the sandwich maker and it will be seasoned. Cut up, put a bit mayo as a sort of dip. Probably season the mayo with something.
Hope everyone has a good day.
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Picked up a prescription delivery. Found a box from FEDEX outside. Brought it in as to avoid porch theft. Noticed it was for the top floor, decided to carefully bring it in and make my way one stair at a time. Left it up one small flight of stairs up at time. Knew I could not make it all the way up so left on landing one flight up. Got down the stairs slow and steady. For some reason, I went down using my hands on the stairs while backwards, turned around once I got to the bottom. Hoping nurse gets here soon so I can work out. Found some resistance elastics which I forgot about, picked them up at a bargain store, different tensions so that is good.
Breakfast was plain, two eggs in the sandwich maker, used some manwich seasoning, I like the taste of that and salt mixed up and cooked, tiny bit of ranch dressing after slicing up. At some point, will convert my eating peanut butter out of the container to a half piece of english muffin and butter. I know it will be less of a caloric punch.
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A Facebook memory came up today and it was my last day of work ever! 5 years ago. Crazy to think it’s been that long but no regrets, I love all the time I have now.
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@candy-678 Vent away girl. It also gets me too that some people just don’t have empathetic understanding for one going through this Stage IV mets experience. Unfortunately the media in Hollywood, Sports, & Politics portray Breast Cancer as a pretty & Pink, temporary illness that will go away after treatment. They have no idea or are not educated in how insidious Breast Cancer is and how devastating it can be when it metastasizes. They sound like a bunch of judgemental old church ladies, in their own little click. Candy don’t let them take your power. You have it all over them. Let them cackle away.
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