My Husband, My Life, My Love, My Family, My Cancer
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Thank you for all the pocket duty, I really appreciate it. Gave myself a good cry session at home and have now said no more, me being sad won't change what will or will not happen. MRI supposed to be happening sometime in October. As far as coordination, PT really has improved things for me and if I will continue marching and swinging arms with the walking poles which I can do sitting or standing. Take my own advice. Cannot sit and just be depressive or I will get nothing done. Other than the bad MO news, everything else from breakfast to having SIL at MO app't was good. SIL even hugged me. I will have to just do what I enjoy, eat well and sleep more as I have probably already said and was smart taking cabs to and from the hospital since it was hot. I have learned getting in and out of cars as well by sitting my behind. I accept the challenge my brain may be throwing down and I will safely continue and probably increase the balance exercises. The rest of my body is still strong, will try to keep it that way.
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Sending love and support to you Mara. I admire you for keeping up with the exercises and working on strength, and like someone else mentioned, thinking of you doing steps in place reminds me to just keep moving my body, doesn't have to be fancy or for long.
Driving home from grabbing a few groceries, I was blasting the song 'Sabotage' by the Beastie Boys (yes, I'm Gen X), and a dude in a truck at a light gave the nod of recognition of coolness. Lol. Made me laugh.
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Mara, I have to second what the other gals have said. You are more active and stronger then just about anyone I know. Keep marching like Mara would, or at least I'd like to try. But you, well you DO IT! Here's something I learned from 22 yrs. of MS. The brain is resilient. It learns to create new pathways. The same holds true for patients that have had strokes. It is working on OT and don't let that MO get you down.
emac, I hope your heart rate and nausea have settled down considerably. I've upped Zofran from 4 mg to 8 mg to help with nausea and try to prevent vomiting. Staying hydrated is difficult when your sick, but try to do the best you can. Beat this set back quickly.
shanagirl, I hope you were able to get an appt. about your hearing loss quickly. Honestly, it's been two months for me and no improvement. I haven't seen an ENT though, due to the fact the neuro said it was all due to depression. I think the depression meds have finally kicked in as I'm not so stressed and weepy.
Love the sunflowers and bees and Theo and waving hello to all. In pockets for up coming scans and support.
Two quick things. SIL is resting in ICU as the liver transplant was successful. She's still sedated but the good folks at Penn Med are taking great care of her.
Had my lumbar puncture today. I think the Dr. thought he was poking a voo doo doll. I had warned him what neuro from 20 years ago told me, tell anyone in the future doing spinal that you have severe scoliosis and they need to use a pediatric needle. It was so painful this time, many pokes and the Dr. kept saying your back is so tight. The one poke I levitated off the table and whelped loudly. He finally offered IV sedation. So after 5 jabs for numbing and 3 tries with "the small needle" haha, the nurse said well at least he got plenty of fluid. Ok then. Now to wait on results.
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I went to bed super early last night and slept almost 10 hours, must have needed it. Felt better this morning. Still punting any negative thoughts to the side. Got a more manageable frustration which is my internet, has not yet come back on, having to use my mobile data instead. I will spend the day and if nothing comes back will have to switch services. Did my bridge pose which was good, if there is no internet, will stick with moves I already know and the marching with sticks. As far as worrying about the future, I am turning the thoughts off. I am not there yet and refuse to believe the PT won't help at all. Stubborn is my way.
Also doing laundry 😍and mixing soap for my spray dish soap. I am using up my bar soap by having it in a container and using hot water to get the soapy water. I then pour it into a funnel and then I put a bit of dish soap in and spray on dishes. Cleans very well. I save my oxy clean laundry spray bottles to use at the kitchen sink.
Breakfast will be likely be an egg mcmuffin or a simple poached egg and muffin. May try making an egg salad mix as well but add onion powder and a bit of mustard. We will see.
I am in everyone's pocket who needs me and hope we all have a good day.
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(Good Morning! Yesterday typed my story about my Sudden Hearing loss in right ear. Ugg😩the whole post disappeared.SOOOOO ANNOYING!
Long story short, tried irrigating with my ear irrigation kit twice on Sunday. Nothing, water ran clear into. Tub. Called PCP on Monday, got covering dr to see me. She tried but 👎nothing. She told me to see an otolaryngologist. DH spent rest of day calling various specialists in that field, but couldn’t get me into see anyone before Oct. Yesterday I had my follow up with my neurologist pain mgmt, dr,following the injection procedure from Friday. Cervical stenosis is better and procedure worked. I told him how frustrated I feel because can’t hear anything in right ear, and no one will see me for a month. He. Wants me to go to the hospital emergency room because they will have specialists there who will treat it immediately. He told me not to get on a plane unless this is resolved. We are flying out on Oct 4 to Florida to see our Great Grandson and other family for a little family reunion, so I have to resolve this right away. This the. Story I tried to type yesterday before I lost it. One thing I mentioned is that the PCP was an idiot who didn’t know what she was doing and her. Shaking hand kept jamming me inside my ear 👂 ouch. Sh was the covering 90 yr old doctor. Just joking and exaggerating.), but she did have a condition that made her hands unsteady, and I think she just wanted to brush me off. I ill be going to the hospital this morning, and dread the long wait in the emergency room.
@sunshine99 i love the Colace story🥰. I hope this resolves. I’m nauseous and dizzy with this ear buullshit.
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Shanagirl, I am so sorry your ear is causing so many problems. In your pocket for a shorter ER wait AND relief for the ear which I believe is just as needed for balance as the brain.
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Shana~ thinking of you and your ear issues! I can imagine how annoying that must be. I sincerely hope they can help you at the er! Thinking good thoughts for a short er stay! Hugs sweet woman
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kersis113 - I agree with what you wrote the other day: "I have attempted to join some of the Facebook groups but they are a little overwhelming and have a lot of information and posts that make me more nervous than supported or just being helped in someway."
I joined and visit the private Facebook group for Orserdu (elacestrant) the new oral SERD (Selective Estrogen Receptor Degrader) because the Orserdu thread on BCO is not very active. The FB group is active and has ~300 members, but I find it lacks the more personal features of BCO discussions. By that I mean BCO commenters clearly get to know each other and I find the support and tips shared more meaningful and more helpful.
mara - Your thought to keep on with PT is exactly right……as is Irishloves' comment about the brain being resilient and able to learn new pathways. You said it…."Just have to sleep, safe exercise and diet". One day at a time.
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I genuinely care for the people here. I don’t have time to waste with people who don’t care or get it. Here I feel like a family. I hope you all know I care a great deal. Hugs to you lovelies
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You all have made my day today.
Micmel, YES! This site is full of understanding family. I don't waste my time with other groups either.
Mara, sending you supporting hugs and prayers. You are an inspiration and make me get out of my chair!
Shana, Praying for your ear issues. It must be frustrating on top of everything else.
Irish, Ouch! I am so afraid of a lumbar punch. I am sure I would have to be sedated if I ever needed one. I am also so glad your SIL is doing well. How is she today?
My BIL has started taking a supplement that has completely eliminated the major problems he has had with his gut. I am so tempted to try them. Anyone else heard of Plexus or taking something that helps? My onc just doubled my Prilosec but I am a little apprehensive of that.
Take care.
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Sending positive thoughts and prayers to @mara51506 and @shanagirl. Hope that all goes well ♥️
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Good morning, all.
I do read all the posts, but some days it's hard to remember and comment on each on, even when I pull up a Word document to write my comments.
I saw my MO yesterday and we talked about the Ibrance. There are a couple of other options, none of which she feels are right for me. The first option is a no go because my recent EKG was at the threshold for potential heart issues. The other option has too many side effects, and she's not sure the size of the pill (which is the problem with Ibrance.)
The plan is to keep bugging the gastro doctor until I get an answer. I started the "bugging" process and am supposed to call them at 10:00 am today to try to get on the schedule. This guy books far in advance, but even the scheduler told me "the squeaky wheel gets the grease." I just don't want to squeak so much that I piss them off and they stop trying to work me in. We shall see.
She (my MO) made an interesting comment yesterday. It was something along the lines that all these specialties don't communicate with each other and I need to be my own advocate in getting what I need. The gastro doc doesn't know that this swallowing issue has caused me to lose about 15 pounds and I'm living on Ensure and pureed/soft foods. I love the gastro doc. He's just really busy.
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@sunshine99 Keep pushing the scheduler for a cancellation appt. I got moved up 4 months by telling the scheduler how ill I am and the need to be seen asap. It worked.
@shanagirl I hope that the ER can help you asap. We don't have but a small hospital with few doctors and fewer specialists. They gotta get to the bottom of this for you so you can enjoy your family reunion.
Waving hi to all and in pockets for scans and well being. Haven't heard any thing else on SIL. I know she's in ICU and told her husband to stay home. LOL. She's a pretty independent person.
Today is a bit better with healing from lumbar puncture. Not as painful and able to get up without help. DH still taking good care of me. He bought an large air fryer and is learning to cook, really practicing with that new appliance.
I see some results from the spinal tap are in my healthcare portfolio, but frankly I'm not looking. Waiting on MO's take, appt. next Friday the 15th. He's coming in on his day off to see 3 patients, including me. What a blessing he is. Hope everyone has a good and pain free day.
Laurel
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Shana thinking of you hoping you made out ok in the ER yesterday.
irish Hope your sister-in-law is improving each day and you are feeling OK from your lumbar puncture. Fingers crossed getting some helpful information from it.
Sunshine Don’t blame you for not wanting to be labeled the annoying patient. However, with some of these offices that are so busy the squeaky wheel does get the oil! Maybe if you don’t get in within a reasonable time your MO will reach out ? Hopefully it doesn’t come to that.
Rk Was nice to see ya. Sending you strength and peace.
Intolight Not familiar with Plexus. Would be wonderful if it helped you also! Worth a try if its MO is on board with it.
dodgersgirl thinking of you, sending you strength and hugs.
Yep agree with you ladies , Mels living room is home for me🥰 Nothing but love and support here.
Been up half the night, prepping for a colonoscopy today.Forgot how much fun it is. I’m starting to believe I was meant to live a tortured life.. as many here do!
Hi to all in the room, wishing you a peaceful day.
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Doing some laundry which is making me happy of course, cleaning up house etc. Cats are happily drinking their smoothies. I made a smoothie for myself but they got in on the action as well. Just used wet food portion and lots of water. Fluids don''t hurt and they love it.
Not sure what is happening today. I will get breakfast and hop on the treadmill. Getting used to that again, still necessary to build strength and coordination again. May also walk around the block. Probably schedule Paratransit for a Tuesday pick up tomorrow for mail pickup and another trip to mall for a walk and ride home, phone in for my prescription today and have it delivered. I will get started taking a heavier focus on not just PT or OT but the actual walking. I feel like I have simply accepted losing ability and my family is following my lead on worry about the brain. You can improve coordination through exercise and it is time I did it.
I also feel the increased worry from an educated guess from MO not my radiation oncologist without a scan could be planting ideas about dementia that my family and I have just assumed to be fact without actual proof. Fell twice on ice this winter, tripped over something and fell in apartment. This does not deny the possibility but the idea that cancer itself and the treatment can do things to muscles is a strong possibility too.
I am planning to live as though nothing has majorly changed. I do like the services afforded to me but feel like writing my brain off so soon does not make sense. I need to make sure I am taking care of myself. I don't feel my brain is less than it used to be and am not accepting that as anything until something shows up. Saying that it cannot be improved does not encourage me to continue any treatment. I told SIL I am a stubborn woman and will not lay down and accept an unproven dx, just an educated guess. Only thing I will agree that was suggested by family is to set up POA etc in case I progress in cancer or there is a brain thing and just live life.
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Since I will have a nurse calling or visit today, staying home and mostly marching. Did fine with last night's mall walk. Also need to get my prescription delivered as well due to the nurse call or visit.
Breakfast will be poached eggs and some beans and bran with cheese ground up. Prepare the eggs as the little steamer takes a while. I don't leave them in the shell, use a little shelf in the steamer for that. Maybe make a bean pizza with the english muffin, sub in taco seasoning mixed with water to act as the sauce and I am not sure what else. Another thought to get stuff used up is use the pancake mix and other kitchen ingredients to make different kinds of pancake bread. It would go in the sandwich maker as I don't have bread pans and I think I would prefer to make it on the fly. We will see.
In pockets for anyone needing me and hope we all have a good day. Mel, enjoy Theo, he is precious.
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Good to hear the stubborn part of you moving forward as if nothing has changed. Which really nothing has officially. I fall too , you’re right about the treatments and the toll it takes on our body. I stepped on one of Theos rope toy’s yesterday and it burned and hurt so bad that I ended up in tears. I’m slowly losing all of what you speak of as well. Time does take a toll on a cancer body. Thank you for the comment about Theo. I sure do love him!
hope everyone is doing ok and love to all
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(LivingIVlife)
Hello to all!
Mara- just keep doing what you have been doing all along. You are a woman in constant motion. Just have to be a little more cautious.
Irishlove-hope your SIL improves each day. I don't know if the lumbar needle is anything like an epidural but when I had one for the birth of my daughter I was ready to punch everyone! You have gone through so much!
Shanagirl- sorry for your loss of hearing. I'm surprised the "irrigation " didn't work. Hopefully they can clear it up before going to see your family.
Sunshine- keep pestering everyone you can. The doctors don't know what the other ones are doing. No communication whatsoever.
Emac- how are you doing?
Love the pictures of flowers and bees and of course Theo.
I forgot to mention I had a brain scan the other week. Found out all is clear, nothing there. ( lol). I find when I am out walking I get shortness of breath but mostly my blood pressure jumps up. Blood pressure has been high the last few times it has been checked. Get blood work done and see MO next week. I know she will say to see my GP regarding the blood pressure. My daughter said to ask the MO for a referral to my GP as he is always so booked up. 😭 😆
Mel- thank you for this wonderful living room get together
Missed so many of you but I am always with you.
Debbie
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Good morning, all!
Well, I thought I had an earlier appointment for my EGD study, but it turns out I barely missed getting that slot. I called the office this morning and was told I was going to be put at the top of the wait list and that the scheduler was going to make my procedure a priority. He also said that they have several cancellations each week, so I’m hoping to get in earlier than November. I’m trying to be “squeaky” but not annoying. Haha My MO’s nurse has offered to bug them, if necessary.
What a sweet MO, irish, to come in on his day off. I hope you hear something positive about your spinal tap.
Cookie, I hope your colonoscopy goes well. One hard part about those is that we’re somewhat dehydrated when we go in, and our veins are harder to poke.
Dodgersgirl, thinking of you this morning.
Waving hi to Rk, Intolight, mel, shana, mara (once again, you’re a busy beaver), believer, emac, and anyone I’ve missed. Heading out to the desert to see my dad this weekend. It’s supposed to be 112 degrees on Saturday. Fun!
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Mara, I wouldn't worry about brain damage unless I heard it from the RO. 7 years to show symptoms seems like a lot. Keep up your good work.
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Mel, agreed. Still feeling stubborn as well. Planning to book Paratransit and move mail check to Tuesday or Wednesday and go on a mall walk. That will let me look into multibooking. I think older DB and SIL are more worried about me falling than I am. I do overheat, need to watch that, was nervous about the dirt road but it has been leveled out quite a bit so no real need avoid going outside.
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Waving hello to everyone here in the great Mel's room. Like others, this is my go to place. How lucky we are to be able to "meet" here. In pockets for scans and for any support that is needed.
No more news on SIL. I called but I'm sure they are busy. She is probably still in ICU. No news is good news.
Still not looking into my portal. I still have intercranial pressure, hearing loss, severe tremors head and hands and something horribly new, numbness in chin. I have had burning pain in spine and now legs. Guess I'll know more by next Friday. I just count the hours from waking up until bedtime. Sleep is grand.
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Irish, sending fervent prayers.
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Well the good news is I am feeling better today and able to sit up and even went to visit my parents and did a little vacuuming today. My heart rates are still elevated and I still wear out quickly. The results of the MRI confirm multiple liver mets in my liver but clear the lungs of tumors. What I have going on there is a case of pneumonia so I am now on 5 days of Levaquin antibiotics and I had to go in Wednesday and today for IV hydration and I got a dose of IV antibiotics today also. My MO decided to skip Taxol this week to let my body recover. I will check in with him next week and see what the new plan is. The PA said that it's likely both the Piquray and Fulvestrant have failed at this point so I'm on hold while they review my case. I don't know, I've always been pretty positive about things and I've heard so many encouraging stories here about people reaching NED status or at least stability with various drug switches. I haven't given up on that but I'm also starting to think my journey with this cancer may be shorter than the 10-15 years I had hoped for. Who knows? No one, with or without cancer, really knows anything for sure right? I think I'm just feeling a little beat down right now. I'm going to have to come up with a more creative way to shorten my signature because at this point it's getting ridiculously long. LOL.
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Emac-Glad you are feeling better. How could the Piquray have failed already? It seems like you just started it and I wonder if it has had the chance to work. I know you were reluctant but please get a second opinion. I think these can be done remotely-teledoc. They could review all of your medical info without you having to travel. If you MO is offended, that's on them and an immature perspective. It is your life that is at stake and I think you would want to be sure no stone was left unturned. Pneumonia sucks on top of all of this but it could explain the weakness and exhaustion.
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Beautiful Mae just adorable. I’d love to see that outside my home! Thanks for sharing
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Mae- just adorable and right outside your door
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Happen to be in the neighborhood this morning, so dropping by the living room to say what a lovely picture, Illimae! It just immediately brought a smile to my face and added some serious "uplift" to my early morning coffee and news read time. Thank you!
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Emac, I am echoing the feeling better relief for you. I also agree with Chicagoan that if you want a second opinion due to the rejections of all the different treatments, a second opinion would definitely be worth it, especially if it could be done online. I am also glad you got to see your family. Take it easy with all the chores, maybe pick one you get done quick or vacuum one room at a time. I get tired and this is a saving grace for me. I even do it when it comes to laundry and cooking.
Mae I love those deer, very nice view out the window you have for sure.
Mel, hope mouth and any pain are less, I have a canker on the inside of the cheek so not bad.
I have a fair bit on the agenda, all things divided up in sections. Since I count on any money I make to reduce spending on food, I allot time for that, 10 mins marching or walking inside post meals and sprinkle the PT exercises throughout day. Finding it easier for the bridge pose that I have to hold for 10 secs to do at least 5 at a time. I like at least 5 mins of the seated or standing exercises I do with my walk sticks for extra cardio. Just hold them up higher so they can clear the floor.
I am feeling good about my decision re the unproven brain information. Treating it like cancer, I don't know what will happen until something is shown. Think it would have been better if SIL had been able to come after MRI so we could see if radiation damage is showing. Until them, set up POA with brother thru lawyer, keep walking and do more outdoors. Going to book a couple of Paratransit trips, one for mall walking. Like taking longer steps and other to check for mail.
Finally, breakfast will sound weird. I am calling it some sort of pancake bread. Planning to cook up some sort of bean, meat and spinach, small amounts as there will be many ingredients. Have to make them almost one at a time as no real counter space to use. Chop up the bean, meat and spinach with wheat bran to keep ground beef textured after meat heated through, put them in a container as I think this mixture can be used for more than one meal, could use with pasta or rice later. I would use an egg for the pancake mix and a little chocolate milk, cannot detect the taste and cook up in sandwich maker. Can be made sweet or savoury with syrup or topped with a mix of ketchup, mayo and salt. Again, ingredients like the meat, wheat bran and bean will likely be used over one meal today, seasonings will vary. Let you know if it is good.
Hope everyone has a good day, in pockets for everyone who needs me as well, I am in my own pocket as well with advice to not worry unless there is something to worry about.
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