My Husband, My Life, My Love, My Family, My Cancer
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Checking in, just meet with Head/Neck group nutritionist. Only slightly dehydrated and getting Boost or Ensure drinks to try and get calories and protein in. If not improved by next week, we'll start discussing a temporary feeding tube placement. Until then, I can pop in for IV fluids , if needed.
Expectations are that I should turn a corner soon as the nerves repair and send correct signals. Physically I'm happy to lose the weight but mentally I'm finding the lack of food enjoyment very distressing. Also, I've been horse for so long now that I can't remember what my normal voice sounds like, this I'm finding particularly upsetting.
Anyway, running errands, hopefully good news soon. Thanks everyone, you all are the best 🙂
Edited to add that the neurosurgeon is still concerned about the lack of improvement, so I go back Tuesday for more physical exam, a scope, I think.
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Glad to hear you got to talk to someone about this Mae - let's hope that corner is soon!
Not much new here, MO says we scan at some point in the next three weeks before monthly chat end of February. Yesterday's prolia shot was a doozy and its hurting pretty good tonight. I even got the good nurse too! Getting out and about more and more and while I don't need the crutches so much for propelling, I need them for balance and I dont have as much range as is needed to manoeuver here in town, so it helps to keep them around yet. It still puts a lot of strain on the upper back and chest,though.
Brunch this weekend with a friend who I haven't seen since September? Last time I saw him I could barely walk, so it will be interesting to see his reaction.
Have a good one all!
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Thanks Micmel!
Mae I can see by the tone of your posts that small improvements are being made. Well Done! When you read them back you’ll no doubt see the same. Hopefully your next appointments will put your mind at rest or at least let you know what’s next.
Dodgers- been there with the big D. Steroids and mega antibiotics floored me for at least a month after an infection during my primary treatment years ago. I was unable to leave the house as no warning before a D attack... horrible. You’d have thought meds would have improved since then. You will get there though...just wee short trips out to begin with though and you’ll know where all the loos are! I avoid public toilets like the plague, but needs must and I carry my own wee emergency D kit....sigh...
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Good evening all
Mae and Dodgers I hope you both feel better soon. Take care of yourselves. Warm hugs for you both.
My husbands brother (85) passed last week and we’re in Buffalo for the funeral. It’s freezing cold and snowy. Good to see family though. I’m slathering hand sanitizer and for the wake I sat in the back next to a divider, dodging human contact. My sister in law is a BC survivor so she understands.
Take care
Tanya
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Tanya—. My sympathies to you and your family at your time of loss.
Sending you a gentle hug.
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Tanya, I am so sorry for you and your family. My thoughts going out to you all.
Mae, glad other doctors are keeping up you. I am not surprised that it could be a nerve issue. All the best for healing
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Micmel I thought I would do a check in after many months of absence. Glad you are on a break with only Anastrozole. I read back several pages and it was good to see so many of you here. Mae, I hope your latest very difficult times improve quickly. Minnie so happy to hear your daughters are coming to visit. I am sure your Victoria daughter is telling you that we have not had a January with so much rain since 1930 and right now it is blowing with driving rain.
I ended chemo in late November after a horrific 5 months. I now have what is called an imbedded intrathecal pain pump and my pain has gone to less than 1 out of 1-10 and when I was admitted to hospice in August I would say it was 20 on the scale of 1-10. But I have decided no more chemo and not even Tamoxifen which my MO suggested. I felt so bad for so long and this is not a decision taken lightly but I want to feel good. Two months off chemo and already feeling better. I even snowshoed at Whistler this week twice albeit slowly.
Best wishes to all of you,
Love Marian
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Marianelizabeth, glad your pain is so much less and you are enjoying the outdoors.
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Cheering on your nerves and body to get back to normal, Mae. And looking forward to when this is in your rear view. (I think that’s the saying lol)
DodgersGirl- so dry about the rads hitting the bowel! Did they anticipate that or was it an error? Can they give you a sense of how long it might be bad like this
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jensgotthis— RO knew rads would hit the bowel. He did tell me that going in. Said I would have side effects. During rads I started getting very nauseous and was given Zofran. RO said unfortunately my side effects would be worse before they improve. Said this current week and possibly into next week would be the worst. Today I was prescribed a prescription strength Imodium that does help some. I have gone in twice this week for fluids. It’s hard to eat or drink right now. I am worn out
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Dodgersgirl, I suffered bowel problems after rads to hip too. Eventually got over that and afraid don't want to go there again.
Marianelizabeth, lovely to hear you are doing better, and yes, so happy my daughter is making that journey to see me. Sadly without the kids but will be good for both of us, to share some Mum daughter time. We have even had a lot of rain in Spain this month!
Thinking of you Mae xx
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Illimae and DG too bad you guys couldn't go in for fluids together so you had someone to pass the time with. Sorry you both are dealing with side effects of treatments in such a distressing way. Hope you both turn the corner pretty soon and things start getting easier.
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Hi marianelizabeth nice to hear about you out and about.
Mae my husband had a stroke several years ago and had the throat paralysis issue. He was recommended to acupuncture. That’s what worked for him. . Love from philly is an acupuncturist maybe she could give you another approach.
Thank you for the condolences. The church congregation that my Buffalo family belong to are so loving and supportive. Lots of happy memories shared. He worked in a school for many years so many people recounting experiences. It was packed with a steady stream of supporters all night. I’ve never seen anything like it. I told my grandkids before we went in that they had to be quiet. Lol times have changed. The kids had a play room
Tanya
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Tanya I am very sorry for the loss of your brother-in-law. I live about an hour from Buffalo. I hope you are going to be heading back to Florida in the new few days because there is supposed to be some weather headed this way in a few days. Its great that he had so many people come to visit you all - he probably would have loved that and it's got to be comforting for your famiy to know how loved he was.
Good to see you Marianelizabeth. The snowshoeing sounds lovely. I do most things a lot slower these days - I'd say snow-shoeing would be one of them. But how nice to just get out in the fresh air, hopefully some sunshine and DO the snow-shoeing. Thankfully the pain is better controlled.
Mae I hope today is a better day.
DG well I'll say one thing - your RO is honest anyway. Alot of them shrug the idea of SEs off. Nausea and D are miserable and exhausting. I had D for weeks when I started Afinitor. In fact, it's what led to my last hospitalization a few weeks ago. The D got ahead my electrolytes and my potassium fell too low. So it's good that you are going in for fluids.I had a call from a thoracic surgeon I'd been referred to. They want me to have a PET scan and then see the thoracic surgeon. I had not been told this was in the works but I guess this thing in my lung looks more like lung cancer than breast cancer and they'd like to get a good look at it via PET CT, and decide if they'd like to go in and remove it. Absolute last thing I want to do. I'm pretty anxious right now. I've never had a PET scan so don't know what to expect and then the visit with the thoracic person - gosh I had such a good visit with Dana Farber that led me to believe I'm stable and can just hang out this way until next scans. HaHa very funny. It could still be breast cancer. Itcould also look the way it looks because I recently had pneumonia. So I'm just trying to be cool right now. I really hate this disease.
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Morning all. I am reading all your posts.
Mae- Prayers your throat nerves wake up soon. Hugs from here.
Sondra- I will be in your pocket for your scans coming up. I get Xgeva shots, instead of Prolia, similar I guess. Yes it is weird that some times the shots don't hurt and other times WOW.
Tanya- Sorry for your loss.
Marian- Good to hear from you. Glad you enjoyed the Snowshoeing.
DodgersGirl- Sorry to hear you are having side effects of the rads. Good grief.
Moomala- Gosh girl. I am so sorry you are going thru all this. The PET itself is no biggie. I have had 2. Inject the dye. Wait 1 hour-quietly, no talking. Then scan- like a CT scanner. Praying that things are ok.
I have a fairly quiet weekend planned. Church and home.
My next CT and bone scan is Wednesday. I am so thankful that I am stable on Ibrance/Letrozole/Lupron/Xgeva. I thank God everyday. I read about all your struggles and I think "Wow I am getting off easy" and wonder when it will be my turn for some rough times.
Hugs to all.
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Moomala,
Just echoing Candy here about the PET scan. It's not a hard test. They test your blood sugar (because it's a nuclear glucose tracer that they inject for the test), quick injection, you lay still for about an hour, and then you do the test. The test itself isn't scary at all -- no banging like in an MRI. Good luck with the test and hoping that it's related to your recent pneumonia. Better to have them check it out, even though it's a massive pain in the neck.
Thinking good thoughts for you.
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Wow, there is a lot going on in this thread. Mea and Dodgers girl, I hope you both feel better soon.
Moomala, you sure are going through alot. I'm praying everything is ok and you don't have lung cancer.
Candy, I feel the same. I feel very lucky to be on ibrance still.
Good luck to Candy and anyone else with upcoming scans.
Hugs to everyone!
Edited to add: sorry Tonya about your BIL passing. I hope the family is doing ok.
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Tanya,
I am behind on my reading, so forgive my late note of condolence at your BIL’s passing. I am so glad you have such a warm, loving family. It makes it just a little easier to get through it. It’s raining and a bit cool here right now, so you are not missing much. It is supposed to warm up during the week, though.
Safe travels home, my friend. Please also extend my condolences to your DH. Hope to see you soon
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Moomala,
I will be in your pocket for any and all procedures. I have had more PET scans than any other kind, and it is no big deal. They shoot a little bead (nuclear) into your arm, and then you have to wait about 45 mins before they do the test. It’s just like a CT scan, so no worries.
I will be praying for good results. I have a strong feeling it is linked to your pneumonia. Let’s hope for that
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Mae. I'm so glad your team is working with you and caring about you. You've got someone in your corner helping you get better. That's reassuring.💞
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Mae, Moomala and Dodgersgirl, sending healing thoughts to those who need it and in pockets for those who have tests or are just bored.
I am really tired out today. Was busy with walking and housework yesterday and then watched my nephew in a play at community theater until very late. It was also longer due to the fact that the family it was based on was at the show and there was a get together afterwards. I did not get home til almost midnight which I am not used to. Enjoyed myself quite a bit, but very tired and fatigued today. Feeling depressive today and close to tears. It is annoying because I am truly not sad about anything, just overtired. Kind of like a fussy baby or toddler who is overtired. I started to wash my bed linens but only got halfway through. Going to start doing the bed a blanket or two a day versus all at once. Off for a nap, hopefully sleep will come my way and will perk up later.
Hope others are having a decent day as well.
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Heh, Mara - the cat and I just woke up from a two hour snooze and I've been in jammies all day recovering from yesterday's rather long day of being out and about. So zonked! I may put on some pants here quick and do a short walk just to get some air.
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Well, still in a depressive mood today for no good reason. It's not about being tired or actually sad about anything. Must be the winter blahs I think since I slept pretty well last night. Just going to put my butt on the treadmill for as long as I can stand and go from there. Would go outside but awaiting a delivery and I have to let him in the building. Making myself exercise should lift my mood before heading over to DB and SIL for snacks. Don't know or care who is playing but food is always a good draw for me.
Hope most are having an OK weekend. Sondra, hope you got out for that walk and felt renewed.
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I'm a bit down today too Mara but I know that I am just tired and mentally sort of drained. Oh and my back hurts today so the chores are moving slowwwwwly today.
I am watching my brother play in the USTA Championship finals in Orlando today. His doubles team are headed into the finals shortly.I have had a busy and rough couple of weeks but I'm taking the next two days OFF to just rest. Last night I stayed up until 1AM so I could watch Speed. I don't know what it is about that movie that draws me in and wanting to watch it every time it's on. Oh wait - yes I do - Keanu Reaves being a dreamboat. Anyway I always think 'hey nothing to do tomorrow so I can sleep in' And then i never do. 6 AM my brain starts and I'm up.
Happy Sunday everyone! I'm hoping to eat, watch movies, nap and do just about nothing else.
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Moomala, I am starting to feel better. Did some really fast walks to different songs. Not sure how many I did but quite a few. I also had breakfast and now eating lunch with a ground chicken burger, loads of spinach also ground, spoonful of queso and sour cream with shredded cheese on top. Put a few tortilla chips to add some carbs and threw onion powder and salt and mixed it through. It is good. Not appetizing looking, but the taste is all that matters to me.
Edited to add, you are going through much more than me and you seem to handle it all. I admire you very much.
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Moomala - that was pretty much peak Keanu for me - I didn't really like his Matrix look. (oh wait! no Peak Keanu was Point Break!) and Sandra B is totally cute in that sundress, its so 90s
And I've always liked Dennis Hopper so added bonus. Pretty sure I saw that in the theatre, but its in my 'favorite movies' folder for when I'm feeling down. Point Break is in there too cause you know, Swayze Mara - so glad you got up and got moving and it turned into more! I ended up doing a half hour last night including 20 minutes straight without crutches. Trying to use them not at all in the house as I think they may have really been turning into a 'crutch', but everything is feeling more solid, so that is helpful.
Rough mental times here - dealing with jerkwad neighbors this morning at 430 (ohh yeah, they got my full fury!) and low sleep and trying to get a mile and a half for brunch with my friend took over an hour due to random train stupidity. And then the down escalator was broken at the transfer point with no elevator option . My thighs were just screaming sore about halfway down. Thank god I can do stairs ok otherwise I would have been stuck. And I figure it was good for regaining muscle strength too.
Taking it easy tonight and watching some dumb Will Ferrell movie or maybe a black and white classic I haven't seen.
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Sondra, sorry you have asshole neighbours too. So hard to deal with for sure. Glad that you have been moving enough that your legs, though sore as you say, allowed you to get where you were going. I am glad for you. Low sleep and issues going where you wanted surely would make me feel the same way. Hugs to you and enjoy whatever movie you choose.
Myself, I am being hard on myself for gaining some weight and trying to ignore my thoughts. I do gain and lose weight within a range of up to 10 to 15 lbs and this is not unusual. I am just going to have to ignore my self critical voice and shut up. If I am that worried about it, I need to simply do something, not just complain to myself with the inner voice. I would sometimes like to take my inner voice and stomp on it as it really is not at all productive. Sigh. So many people have bigger problems and I need to remember that and be grateful that I do have the option to move and live decently.
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micmel, you doing ok?
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During my 1st round of chemo a friend brought me some chemo popsicles. Google it, but pretty much fruit and tofu blended, then frozen in popsicle forms. Tofu provides protein & cold is typically soothing.
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Mae~my sweet friend. How thoughtful you are. Everything you’re going through and you’re worried about me!? You’re such a doll baby. I have a wicked cold. It’s been kicking my ass all week long. It’s turned into a sinus infection and I’ve been resting a lot. I’m sick of being in bed as I’m sure you all under that at some point.
ive also been extremely concerned about you, and didn’t want to be pushy. I know how my GF is!! 💗 🌹 I am slowly feeling better. But now DH is-home with it now. Yuck! I’m sending you hugs and good thoughts.Hello to everyone else!! Hope all is well. Or as well as we can be!
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