My Husband, My Life, My Love, My Family, My Cancer
Comments
-
Mel
Such a sweet face on that puppy. Fingers crossed that your application is approved. I'm sure you will bring joy to each other.
Mara
Glad to hear that you have the support you feel you need.
Cookie54
How did the radiation go? Do you have more sessions?
sunshine99
How was the coughing last night? Hope you got some sleep and are able to eat more easily. Never thought I'd say this to another woman with a smile on my face, but glad you're gaining weight.
Sondra
Hope you've been discharged and are home getting some sleep and pampering. In this heat, my choice would be an ice cream sundae while propped up on pillows 😋
Shana
I am in awe of your MO and his PA. So glad you have them. I chose my MO for her education and experience, but there is no warmth in that office. Thanks for sharing what occurred. It gave me some encouragement and hope as well.
You and I are in very similar situations. I became stage IV last May with bone only mets. I will turn 73 in a few weeks and I take Kisqali/faslodex/xgeva. After a year of scans every 3 months, I am now on a 6 month scan schedule, which I think is a good sign.
My MO asked what my treatment goal was and I said "To live long enough so that something else has a chance to kill me!"
I think of you all many times each day.
Hugs
Eleanora
0 -
Dodgersgirl, I will look into the leg lift strap for sure, probably order one if I don't need it, great and if I do, it is there, not too pricey.
Looking into more bed yoga as well involving glutes, so far have just started doing the pelvic lifts while laying on the back, lay on the belly and lift my body etc. Not going to put myself on the ground yet. I am also staying out of the heat. Upon reflection, it was not a seizure as SIL postulated or brain issue but simple heat exhaustion. My OT comes today, I will mention the incident and ask about the paratransit. In the mean time, especially when hotter than hades, UBER will be the go to. If I want to do more than marching, stay in the house, move the furniture and simply pace to move the other back muscles differently If I had a leg lift strap yesterday, ambulance would not have been needed.
I was exhausted and went to bed early, slept almost 9 hours. I think the heat, Herceptin and stress about what to do later was too much and I grabbed the rest I needed, feeling much better.
Cleaning the house, laundry, PT and waiting for some peanut butter from Amazon is about it for me, not sure if DB will be taking me shopping, he will think I am crazy but I would really like a mall walk, we will see if he agrees.
I hope everyone has a good day, I plan to take the heat much more seriously and carry a leg strap.
0 -
Today is my 4 yr MBC anniversary. My first MO said with any luck, the fact that there were 29 years between my original BC dx and my MBC dx was an indication that the cancer itself was slow growing and I should have many years left. My new MO likes to spin that I’ve reached the point in time that Ibrance often fails and I will need to move on to new treatment. Guess whose opinion I prefer🙄.
Mel - I am thrilled that you are ready for a new 🐶 and pray that Rain will be yours soon! What a sweet face🥰.Mara - so smart to avoid the heat. I don’t know how outside workers cope. We have been so fortunate where we live in Wisconsin that we’ve not had horrible heat. We are close enough to Lake Michigan that we benefit from its cooling effect.
Sondra - good thing you went to the hospital! Very scary to have a pulmonary blood clot.
Shana - what a wonderful MO. So envious.
Emac - you sound overwhelmed in juggling all the changes you need to make. Here for pocket duty as you try to get things worked out.0 -
emac Thinking of you and hoping port placement went well. Ya know I think we all have done this for so long sometimes it just becomes routine. Then sometimes the changes in treatment etc along the way kinda jolt us sometimes and we realize we're not just robots. We all deal and have dealt with so much but we we have emotions left and feel nervous like a first timer. Sometimes I still feel like I'm in a bad dream and can't wake up. Sending you love and strength as you start Taxol.
sondraf So glad to you went to the ER and didn't waste time. Those large PE's are nothing to nothing to poo poo. Gosh that hospital has sure been an interesting experience for you and DH. Hope you get out sooner than later and just let thinnners do their job. Fingers crossed.
Mel Rain is adorable, hope you get approval news soon. We rescued from Labs4rescue and was a fairly easy process. I love the adopt don't shop mentality. There are so many animals that need homes, wish I could take them all!
Shana So happy that you had a heart to heart talk with your Onc team. They sound fabulous and hope they gave you peace and hope to carry you through.
Mara This heat is not joke, I opened my back door today and felt like a wall of thick air. So yep definitely good idea to law low for now. Glad you have medical team support to keep an eye on you also.
goldens Congrats on 4 years! Let's keep it nice and slooooow.
SBRT went well , RO said she feels positive about things, her positivity was comforting. So only need three more since it is high dose to specific area. Welcome the "easier" treatments compared to other crap we have done and still do! Definitely enjoying my 6 week break from Xeloda too. but definitely a tease also lol
Waving hi to all I missed, wishing you all well.
0 -
sondra sorry to hear you have an embolism . Apparently cancer patients are prone to these, nobody told me until I had one! Mine was found on a scan, no symtoms . I was on full stength blood thinners for 6 months and am now on a lower maintenance dose forever. I never fall over, but during that 6 month period I slipped while cleaning the bathroom and hit my head. That means a trip to the emergency department for checks you dont have a brain bleed. All clear, but that was after waiting 7 hours, without food or drink ,in case I needed an operation. Pls take it easy for the next few weeks until the medication deals with the embolism.
0 -
@mara51506 — I am to the point that I can’t get in my car without that leg lift strap. I keep one in my car and I have a 2nd inside the house (which I haven’t needed but have it, in case)
Love reading about the exercises you are doing in bed. I have a few from PT that I can do from my recliner.
0 -
@micmel, fingers crossed for a successful adoption, she is adorable for sure.
0 -
dodgersgirl, I bought one of those leg lifters, though I can get in DB's van, it would be nice to have on hand if needed.
0 -
@dodgersgirl, I plan to keep practicing and walking indoors. When the weather is civilized again, get used to going to the bus stop, but always UBER when hot. I did pick one of the leg lifters as well. May try it out on DB van but I can usually pull my leg in and use handle higher up.
Breakfast was good, just a garlic english muffin with an egg that I did not mean to poach but put a lid on the wee fry pan and cooked up a sausage patty in the microwave. The cats and I really enjoyed, they enjoyed the leftovers after I was finished.
Older DB wanted to know if I needed a rest today but after good sleep and know we aren't going out in the heat, could really use a trip out that is not hospital related, as I told him, still need to be active, just safer.
0 -
I'm managing to eat a little more today. I've eaten 1268 calories as of 3:29 PM. Weight was down again today, but I'm sure yesterday didn't help. Hopefully it will be up tomorrow.
3 -
I’m thinking of all of you having a hard time. I know that this constant ebb and flow with my mouth is driving me crazy. I’m sure we all feel at our wits end at times. Everyday I am the cancer person. Every ache or pain….? What is that? I just hate doctors appointments and they will never be stopping anytime soon. I see my best friend with her beautiful house and pool they just put in. It’s gorgeous. Even if we put something like that in. I couldn’t enjoy it. I hate the heat. The sun. Humidity. The whole she bang. I just miss normal hormones. That’s what caused all this mess. That and the treatments. Just sitting outside makes me sweat. I always wanted a pool. I had one as. Kid. Loved it so much nothing really turned out the way I thought it would. That’s very deflating . I’m sending out hugs of support. Love to all as well.
2 -
mel, I think you nailed it. Sometimes, everything just gets to be too much. I think I may have mentioned it, but my next blog post, unless I change my mind or die first, will be something like, "Columbo and Vinny."
Columbo constantly says, "Oh, sir (or ma'am), just one more thing!
Vinny asks, "Is there any more sh!t we can pile onto the outcome of this case? Is it possible?"
That's how it feels sometimes. I'm stopping Ibrance. The last two doses (16 days apart) landed me in the emergency room with vomiting and dehydration. I'm done with it. Now I see that coughing that lasts weeks or months and weight loss that gets progressively worse are a couple of potential side effects. MO didn't mention that when I talked to her on Monday and I'm kind of pissed about it.
I truly feel for you and your mouth sores. It's a constant hurt and it totally takes the fun out of eating and drinking.
Hoping for a good night's rest for all.
Carol
1 -
Goldens - congratulations on another anniversary. I like your old MO's line of thought also. Why borrow trouble?
Sunshine - I'm so sorry you ended up back in urgent care. Hopefully, stopping Ibrance will lead to the end of those troubles. Your Columbo and Vinny references made me laugh. I used to love watching Columbo, and just recently re‐watched My Cousin Vinny.
Do you remember the other mysteries in the series(?) with Columbo? There was McMillan and Wife, Hec Ramsey, and one about a peace officer from Taos, New Mexico on assignment in NYC (I can't remember the name).
2 -
Hi everyone. Hope you are doing as well as you can be, having a nice evening.
Tough day/night here. The pressure in my head is off the wall chart. The burning in my spine is a 9 out of 10. I keep blaming this on MS, and now I'm not so sure. I scored a cancellation appt. for tomorrow morning with a new neurologist. I'll be frank with you, I pray it's MS. The last CT scan with contrast did not show any brain metasisis. I believe I read that it is not very useful in ruling out Lepto Meng. I forget the spelling now. I also read from Bestbird's book that sometimes inflammatory diseases (which MS fits) can sometimes results in a false positive.
So tomorrow I guess I'll ask for an MRI and spinal tap to rule that horrible disease in or out. I've tried to find posters that talk about their symptoms, but the one thread mostly dealt with diagnosis and treatment. I haven't had any type of seizures, thank God. I was hospitalized 7/7 and 7/8 and treated with 3 rounds of solumedrol and 6 rounds of broad spectrum antibiotic for sepsis (which came back negative). Followed up with 10 days of prednisone taper. Going down hill since the taper. My symptoms were severe head tremor, numbness over head and face and spine pain. I just don't recall this pressure business in my 22 years of MS. Numbness, yes.
2 -
I'm sorry you are suffering Irish love. Glad you were able to get an appointment this morning. Hope answers and relief will be found.
0 -
Irish
So sorry you're suffering like this. I had skull pressure after SBRT to a skull bone and it lasted about 4 months, but it was minor compared to what you describe. So glad you stayed on top of things and got that quick appointment. Fingers crossed that it gives you some answers and a good treatment plan. You deserve a long and lovely rest from this.
sunshine99
It makes me so 😡 when the MO isn't honest about SEs. I had severe GI issues with Kisqali at the beginning and my MO's response was that she didn't know of any patient having that problem! It took a dose reduction and 6 months of very gradual improvement to bring it to a tolerable level. I'm sorry that hasn't worked for you with Ibrance.
On the nutrition side, for a long time, even pre-cancer, I've relied on a protein drink called Evolve. Very high quality plant protein (20 grams) in the size of a child's juice box. Like all things, you can find it on Amazon, but I prefer a site called Vitacost which regularly has sales and coupons. You might want to try it.
Hope your next treatment is as easy on you as possible.
Hope everyone stays in a cool place today.
Eleanora
1 -
Irish Glad to hear you got in with new neuro today. Prayiny they are able to shed some new light on what's going on. You certainly sound like you are very good at advocating for yourself, which I admire. In your pocket today and always. Hugs.
Mel You summed up the sh**t show many are living in perfectly. There are so many questions we ask ourselves through this daily. I am a faithful person but I don't understand why some suffer through life more than others? Hoping that adopting Rain brings you much joy and mental comfort.
Sunshine Love the idea of your new title glad your able to still joke after all you have been dealing with. Don't blame you for being pissed at MO. Why would she fail to mention the obvious side effects, just doesn't make sense!
mara Hope you had a good day yesterday. Seems like our heat wave ends late tomorrow hope yours does too.
No big plans today here, we'll see what the day brings. I can always find something to do or clean around the house. I'll get a quick walk in with Daisy this morning before it gets hotter. Sure missing my own mental health walks outside. Something to look forward to in a couple days.
Continued prayers for strength for everyone here.
1 -
Irish - I’m praying you get some quick answers so you can get some relief. My heart goes out to you.
Sunshine - this damned disease is always trying to take something from us but I’ve noticed our sense of humor (or is it good ol’ fashioned sarcasm) still remains. Loved the quotes from Colombo and Vinny!
Mel - keep meaning to ask what strength of Ibrance are you on? I started at the usual 125mg but have had it reduced to 75mg over time. I do find that the lower dose does help the fatigue. I may get an occasional mouth sore but it is usually gone after 24 hours.
Emac and Mara - any updates?
0 -
Good morning all,
I'm new to this tread, hell, new to the whole cancer thing. Only 4 months from initial diagnosis of stage 3a IPLC and IPIS, and recently (as in 2 weeks ago) diagnosis of mets to brain following inpatient hospital admission for neutropenic crisis following 2 rounds of A/C. My how time flies when you're having fun. I'm already picking up the pros and cons of MO and the rest of the team. Though I get my treatment from a community-based HMO (Medicare Advantage), I seem to be very fortunate to have fallen into a very good care environment. I live on Florida's Gulf Coast, was working at home full-time (retired nurse, second career in medical transcription for national laboratory chain in their anatomic pathology department), good virtual support network (as in fabulous work colleagues whom I've never met), wonderful, supportive (though understandably anxious husband), one son (lives about 2 hours ago with no transportation….oh well), and 2 caring sisters (though I haven't seen them in years). Three of my other sibs died within the past couple of years (sister and brother related to Covid- he also had MS since his 40s; and a sister more recently from a GI blockage). Not quite retired yet and had wanted to wait until January, but the rapid progression has made it necessary to really look at what I want out of my life. Yay…prioritieis are finally starting to align…just too bad to be on this particular path. I find that I actually LOVE life,and it doesn't matter how much of it I have left, but I approach it face on, one hand hold, one foot hold at a time, even if I don't know where the heck on the path I'm on.
I've already checked out the leg lifter as I'm starting to have some left leg weakness (seemed to predate the mets to the brain), and I agree with the need to try to take care of ourselves (a sundae while propped up in bed sounds like just the right ticket!). We had our 49th anniversary yesterday and though it was a stay-at-home and pig out on Dominos California Veggie pizza kind of celebration, I've never felt so alive and happy. Here's wishing you the greatest of days!
4 -
I've been googling Pat (Sadiesservant) from time to time. Today I found a notice that she died on June 1, 2023. Couldn't find any further obituary but maybe some of our other sleuths can. There didn't seem to be a service. May she rest in peace.
1 -
Seeq, I LOVED McMillan and Wife! I vaguely remember the others.
Irishlove, oh, I’m so sorry. I’m thankful you scored a cancellation appointment. I hope you get some answers, but even more, I hope you get some relief.
Eleanora, I will look into the protein drink. I like that it’s a relatively small package. I will check both Amazon and Vitacost. I wonder if Costco ever carries it. I do have some protein powder that I can add to stuff.
I still don’t know what to think about my MO. I’m feeling disappointed. I did manage to get an appointment with my PCP at noon today. I will discuss all of this with her. The good news is that despite my coughing last night, my FitBit gave me a star for my sleep score. Didn’t fall asleep until after midnight, but that’s better than before.
I was able to eat almost 1400 calories yesterday and my weight was up a bit this morning.
Corduroy mouse, welcome, but sheesh! You’ve been and are really going through it! Happy 49th anniversary!
Chicagoan, it makes me sad and a bit angry that I can’t even keep up with sisters we’ve lost. I hate this disease…
0 -
Hello all. I am reading along every day, just not commenting as much as I should.
Welcome Corduroy mouse. This is a great bunch of ladies. Comment as much, or as little, as you want.
I hate to hear we lost another sister, Sadiesservant. May she rest in peace.
Mel- Love the dog. Pets are a gift from God. My cat is my best friend, by far. I repost memes on Facebook about cats/dogs and how they are better than people sometimes. So true. Sorry to hear you are struggling with the mouth sores still.
Sondra- I was in the hospital in 2021 for 3 days with a PE blood clot. Now I am on a blood thinner pill for the rest of my life.
My gripe, and what I am dealing with, is the lack of understanding/empathy/validation that I do not get from my friends. I don't feel I talk too much about my diagnosis; most of the time I say "I am fine" when someone asks how I am doing. But I think people think that I relish in it. That I somehow enjoy the suffering. Let me try to explain — for instance, we are having vacation bible school at my church. For those that don't know, this is a yearly event that is to try to draw in children for bible study, games, and food. It is a lot of work for the church volunteers. I just do not have the energy to do it. I have unpredictable GI issues. I have fatigue. It is hot. And, honestly, I don't want to help this year. The other ladies have not specifically said "candy, you should help", but I get the feeling they are thinking it. I don't "look sick". My cancer is stable each scan, I report to the church. So why, me at 52 years old when they are in their 70's, am I not helping????
One lady in the church has a sister with Stage 4 lung cancer. This lady has told me her sister drives her crazy because she is so anxious and worries about her cancer all the time. "She lets it control her" she tells me. And I then think she is thinking I am doing the same, by not participating in things.
I lost one friend because I would "make excuses" for not wanting to go do things with him.
Do these people actually think I enjoy this??!!!!!! I want to be a normal 52 year old woman- - working, doing activities, etc. I was thinking about it, and in the 6 years of MBC, with scans every 3-4 months, say 4 scans a year, I have had scanxiety 24 times. Going thru the machine 24 times. Waiting to hear the results 24 times. Praying. Scared sh**less 24 times.
I just wish my "friends" would try to understand me.
Thanks for letting me vent. I got to typing and could not stop. I could say so much more, but I will close for now.
2 -
Im home - got back yesterday afternoon and feel pretty good considering - no shortness of breath or rapid heartbeat, just tired. MO called at noon and was going to transfer me if I wasn't out yet, my usual hospital will be taking over which really just comes down to scan/meds coordination. Chat on Monday so we will see what is up, but I guess on the positive side there was no heart damage or cardiotoxicity from treatment so Im hoping I can continue on Xeloda. Frankly I think the clot came out of either the pelvis or femoral area due to my ongoing leg/mobility issues, my father has had 3 DVTs and I know all the warning signs on the legs and didn't have any of them.
Just for fun the hospital threw in a woman having an actual alcoholic mental break/seizures + hallucinations/confusion on Wednesday night. It was impossible to sleep and she ripped out her cannulas at least four times, attempted to light a cigarette around oxygen cannisters more than once, and flooded half the ward from the shower room once someone finally wrestled her in to wash off blood and quite possibly urine. What a mess that was - I finally found a quiet spot in the family lounge just to get away from the chaos. She had 1-1 (male) nurse on her at all times and eventually someone did a property check on Thursday and found vodka in her bag which is automatic expulsion or rather, they let her self discharge (finally!) as they couldnt/wouldnt at 2 am without reason (duty of care and all that). Her reasoning with the medical staff was that she had to go to ASDA to buy her boyfriends dinner (2 liters of cider and a bottle of vodka), she'd just get a quick drink and then she would come back for her potassium drip, no big deal.
To explain - this was a decant ward from Emergency, where patients go for 12-72 hours before they are moved on to an appropriate ward once space becomes available. I suspect they mix patients according to need so while I was just on observation and was relatively easy, I got mixed in with some more demanding patients to balance the nursing load. I was on the cusp of 72 hours. Overall the nursing staff were absolutely amazing and were there instantly when I started to crack but also patient and caring with those who were so lost in the mind. There really arent private rooms in NHS hospitals, just bays of 4-5 patients which is why you know everything about everyone's condition. This one had some side rooms for highly infectious people or some who needed specific care, but its quite the balancing act I guess. I attend a smaller mostly private hospital for my cancer care (they do some NHS work, but its very very hard to be treated by them due to lack of capacity). But in an emergency its NHS or nothing and everywhere just needs more funding and more hospitals.
1 -
Mel - GET the doggo, Rain looks like she would match you and your personality like PB with J. I bet it would make you beyond happy.
0 -
Candy, My mom had heart failure and it was the same. She didn't look sick but had low energy and couldn't participate in activities the same. It didn't help that her best friend developed dementia. Mom went to see her until she couldn't recognize her any more. She and dad were active in Eastern Star and did a lot with them, but she didn't have the stamina any more.
0 -
That picture of Rain made me smile and warmed my heart Mel. What a sweet pup.
So many of us are struggling. I had a grief-stricken evening last night, had been feeling okay and hopeful for a while, then just hit by waves of grief yesterday, just like getting hit by a wave and sent tumbling underwater to the shore. Sobbing, wondering what the hell my purpose is now, all that awful thinking. Calmer this morning with tea and toast and a new good mystery novel.
Candy, thinking of you. I'm 53 and my energy, well, it sucks. It's so hard to not compare myself to others, even though I try not to.
Sondra, so glad you're back home. What a hospital experience you had, glad they found the embolism and hope the blood thinners keep that from ever happening again.
Sunshine, I, too, love your humor, and I saw your post about stopping the ibrance. Given your awful reaction to it, that makes total sense. Hoping you can be on another treatment that works for you, and lets you eat in peace!
Cookie, hope the SBRT continues to go well. It's kind of fascinating how they can be so precise with the radiation now, I had this on my T9 and it worked well.
Emac, also hoping your port placement went fine and that you can start your treatment quickly.
Irish, really really hoping you get some relief and answers about all the pressure you're experiencing.
Thinking of Mara, Mae, Goldens, Seeq, Eleanora, Tanya, Shana, Chicagoan, Dodgers, Denny, everyone else whose handle here I've temporarily forgotten... may we all get a break, please.
2 -
chicagoan Thanks for letting us know. Pat's struggles are over may she rest in eternal peace.
sf-cakes Sorry you were hit with the tidal wave of emotions, this crap is tough! Glad you are feeling better sometimes we just need to cry it out. Hugs.
@corduroy mouse Welcome to this fantastic group of ladies. Sorry you wound up here but I think you will find comfort in knowing your not alone here.
sondraf Glad you are home! Sounds like quite the adventure you could have certainly done without. Hope you're feeling well.
Candy Yep most people just don't get it! Many times I get the feeling like I'm out here treading water but even my closest friend doesn't see me. Just stinks!
2 -
I am so sad to hear of Pat's passing. Such an amazing lady always with kind words to say to everyone. RIP dear friend.
Corduroy Mouse, welcome to this group although I am sorry for the circumstances. I am a seven-plus-year survivor with Stage IV cancer so hang on. We are here to help as best we can.
I finally received an email notification for this website so hopefully things are fixed. Sorry to have been gone so long.
0 -
So much going on. Sad to hear about sadiesservant, even if we suspected it.
@mara I’m sorry about your recent issues, I know you like your walks and independence.
@micmel fingers crossed for the adoption of rain, I know she’ll be loved.Welcome @courderymouse, this group is varied by age, location, cancer subtypes, lifestyle, we’re a bit of everything.
DH is cooking tonight, which is nice but I hope he remembers a vegetable. I’m enjoying the breeze on the deck, it’s cooler than being indoors.
0 -
Hello! I have been trying to read through the last few days and catch up but have not been up to posting. Things are falling in to place. My port placement went well. It's healing nicely and was able to be used yesterday for my first Taxol infusion. My MO has decided to do 12 weekly Taxol treatments with the Piqray. Forgive me if I've said that. So far so good. I woke up with a bright red, tender face like a bad sunburn and some nausea and weakness but that seems to be the worst of it so far. Doing both treatments I'm not sure I am going to know what is from Taxol and what is from Piqray but it seems like the double whammy should help in knocking this back. Now I'm waiting to hear about short term disability through work. I feel like I need a secretary! LOL.
Candy - I truly think people don't get it unless they've been through it. Most of my friends are medical and they understand the struggle but in their intent to be caring I think they forget how worn out I am.
NKB - I had not considered UCSF but they would be about the same distance. I have gotten several good names. I just don't think right now I have the energy to pursue a 2nd opinion and I have been very happy wit my MO and his team through this.
SondraF - what a nightmare! The NHS ward sounds a little like what we call our clinical decision unit. It's in the ER but for patients only expected to stay a day or so. They are usually lower acuity. A patient like that would have been sent to my department to detox and I guarantee she'd have been put on benzos and likely restrained. It sounds like bed shortages are a global thing. I'm so glad you got to go home and are doing better. Thinking of your husband also.
Congrats Goldens on your anniversary and continued stability with MBC!
Irishlove - I am so glad you got in on a cancellation and I hope they can get the pain reduced and figure out what's going on soon.
Hello to the living room and all those I have not mentioned by name. I read daily and am trying to keep up with posting. May good days be coming for all of us❤️
2
