My Husband, My Life, My Love, My Family, My Cancer
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In your pocket Emac, I hope you can get your Pleurex catheter so you can drain more often. I am also glad to hear family is with you to help you get water and whatever else you need. I am in your pocket.
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@threetree thankyou for your encouraging words as always.🩵yes I am having a nice Valentine’s Day 💘because DH is hanging out with me upstairs. I usually get lonely up here while he is usually downstairs watching the games or Moonshiners episodes with our son. The dogs don’t leave my side.
@illimae sending you Birthday wishes as you celebrate in the bar. I think DH and are are due for a visit to our SIL’s Bar for a nice martini 🍸🥰
@emac877 You are in my heart tonight and I’m sending you virtual hugs and positive thoughts and prayers. Your struggles are great and you must feel so overwhelmed these days. I’m glad you have family with you to help you and give you the support and company you are needing right now.
@intolight It’s amazing the inner strength that comes when we are needed by our grand children. I’m glad you were there for her. Your sweet dog by your side going up the stairs with you and staying with you is just so heartwarming. What breed is she? Sounds like a shepherd. I hope you and DH enjoy your night out tonight…
@goldensrbest I love doing that kind of stuff for my grandkids. It’s amazing how much they come home from school with on Valentine's Day😊. We are expecting another Great Grandson in August. What a blessing. Ca’n’t wait.. Or Grandaughter and her man are so happy. Their baby Jonathan is such a happy funny baby and s a reflection of their good parenting. They constantly send me videos and pictures that are so funny 😂, I get such a kick out of him
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My Valentines gift was two bottles of potassium liquid supplement after hubs volunteered to battle the tourist hordes and pick them up so I could start feeling better sooner, even though I have PT at hospital today. Given its the most disgusting thing ever (like liquefied swedish salted liquorice..he didn't see the problem with that but I do!) its the thought that counts for sure. And it seems to have maybe helped the lesser nerve pain tonight, we will see in the morning. I shall reciprocate the gesture by making him some pumpkin pancakes and bacon this weekend.
@emac877 I really hope they can get your lung situation under control and more comfortable/convenient for you soon. I had lower sats with recent lung inflammation and didn't realize how bad I felt until the steroids started to work and how much oxygen I must have been missing, I cant imagine worrying about getting a glass of water and breathlessness. Having help and a safety buffer around nust be very comforting..hang in there and look to the brighter days coming.
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Shanagirl, our dog is a Maltipoo— the female version of Mel's puppy. In fact, they look identical except ours has longer legs. She has been sensitive from the start and is a real joy. She is our DGD's puppy, but the family shares her since we live together. We heard they are bred to be comfort dogs so it is in her breed. When our DGD is in school, she sits on my lap most of the time.
Had a nice dinner tonight at my DH's HAM radio meeting. They meet in a restaurant so it fit right in with Valentine's. An added bonus was being able to sit with good friends.
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Well, I didn't make it for my appointment. I am admitted to the hospital again. This time they got 1650 mL off the right side and 1450 mL off the left. Nearly 6 pounds of fluid! I discussed briefly a pleurex catheter and the radiologist said that typically they are used in patients moving to hospice which I don't feel ready for yet.
I will have to discuss this with my MO about infection risk vs benefit. Even so, I just started Enhertu so I am in hopes for it to work. For the moment I am grateful to feel better and be able to breathe.
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Dear emac
So glad you've gotten relief. Sorry you're in the hospital, but you need that care at the moment. I have no experience with Pleurex catheters, but pretty sure I've read posts by others who have used them for a specific period of time and then had them removed, and they weren't in hospice. Hope some of them come along to share their knowledge.
Warm hugs and in your pocket.
Eleanora
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Emac, I have just been so sorry to read about all that you have been going through these past few weeks. I've been following along and hoping for nothing but the best for you. I am glad to hear that the draining is done for now and that you are feeling better and safe in the hospital. I also want to second what Eleanora has said above - all of it. Fingers crossed for the Enhertu and that you will be feeling better soon.
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@emac877 I've been following along this morning an I too echo what the ladies are saying. At the moment., relief has come to you and you are in a safe place where you will get the help you need. Prayers go out to you with the love felt on this forum. I’m praying this draining and the Enhertu will make the difference for you, @emac877 .🙏
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I just want to say, dear ladies that I have been so afraid these past days, thinking that something is really wrong with me having esophageal pain and being unable to catch my breath without sharp pain, and coughing each time I tried to take a deep breath. i kept thinking the worst scenario, I was reading thru and re-reading. My chest X-ray and scans which are all clear. Then I read thru Xgeva & Fasoldex SE’s and it was all there!!😳…..Dyspnea ,chest pain, Pharanghitis, extreme tiredness, depression, cough that won’t go away, upper back pain……. And every single side effect I’ve been having. I read this after taking my Robitusin DM nightime and felt mentally relived it’s all been nothing serious. As I drifted off to sleep. 😴 ALL NIGHT I’m happy to say.. . So the moral to this story is Cancer Treatment Side Effects, Ladies. We just need to be more aware of how they are Impacting our life each day and night. I was so prepared to talk to my Onc and Pulmonologist that I thought I might have esophageal mets, and new spinal mets in my spine and ribs until I read each XGEVA side effect. WOW 😮 there were many and I have each one!
Common Side effects
- Depression
- swelling of throat
- Vasodilation Of Blood Vessels
- Pharyngitis
- Constipation
- Back Pain
- Bone Pain
- Dizziness
- Insomnia
- Fever
- Flu-Like Symptoms
- General Weakness
- Pain
- Paresthesia
- Skin Rash
- Peripheral Edema
- Anorexia
- Headache Disorder
- Dyspnea
- Cough
- Chest Pain
- Nausea
- Vomiting
- Diarrhea
- Numbness/tingling of arms/legs
- Back/leg pain
- Bone/joint pain
- Mental/mood changes
- Shortness of breath
- Cough that doesn't go away
- Burning/painful/frequent urination
- Unusual tiredness
- Pain/swelling/redness at the injection site
- Loss of appetite
- Upset stomach
- Dizziness
- Tiredness
- Headache
- Hot flashes
- Trouble sleeping
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Emac-Please consult a pulmonologist. Ask for a consult while you are in the hospital. If they won't give you a consult, I beg you to get a second opinion from a nationally certified cancer center.
Frankly, if I were going on hospice, I probably would not get a Pleurex catheter inserted because I would prefer to die relatively quickly without the inconvenience of being drained. From all we have seen on this board, Pleurex catheters are used for people who are undergoing other cancer treatments to give them a chance to work, so that our bodies can get adequate oxygen and movement.
I have had 3 liters removed at once and I know it is quite "draining," pun intended. Rest up. Hope you are feeling better soon.
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@chicagoan yes I do agree with this. Another pulmonologist consult from a certified cancer center. You speak from experience.
@emac877 Please ask for a consult while you are in the hospital.
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emac, I'm so sorry! You shouldn't have to live this way…
Shanagirl, that list of side effects would be funny if it weren't so accurate. I "love" those TV commercials where they talk about all the side effects of such-and-such drug at the speed of an auctioneer. They always seem to end with, "which may be serious and could lead to death."
DH and I went back to the Social Security office yesterday to fill out another form so that I can get Part B. I had to re-fill out a form that I had already completed and turned in the last time we were there. Hopefully, this time will be the charm. I still can't make sense of the insurance coverage/copay with the Truqap. It's either $0 or $3,389.45.
I think we're heading to the desert this weekend. DH wanted to invite some neighbors for an overnight visit, but I told him that I didn't know if I could handle that. I love these people, but having someone in my house for even just an overnight is too much for me. I feel like I have to be "up" the whole time. I'd rather meet for dinner or something. He's OK with that.
Not much else going on. I need to schedule my next PET scan. Will call tomorrow to see if it's been approved. It won't be until the end of March, and they usually schedule a couple of weeks out, so that shouldn't be a problem. I want to get this done before we switch from DH's insurance to Medicare. Oh, this is SO much fun! (Not!)
Carol
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Thank you. I am seeing a pulmonologist on the 23rd. He is consulting with my current oncologist. I am still looking at the feasibility of a large cancer center.
Shanagirl- I'm so glad you got some sleep and some peace of mind.
Sunshine99- I hope they can figure out the Truquap payment soon for you. It's so wrong that access to some of these meds is so hard.
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I’m sorry emac ! I am thinking of you and hoping for a speedy resolution. That’s a lot of fluid to be removed. Sending big non Covid hugs.
I am slowly starting to better from this hellish Covid. ! Thinking of you all. Shana. That’s quite a list. Ugh!
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Just back from hospital PT and we are starting low and slow again. PT was completely puzzled by my much longer right leg even after I kept explaining 'my pelvis is twisted because Y happened'. I dunno, its in the notes at least that I can't do certain moves but Ill be looking for an osteo later this week to start getting that adjusted. Also, for whatever reason, I cannot get a damn muscle relaxer for love or money. I asked about that too like would one or two hits to just loosen those hip flexors enough to get things moving, and apparently they almost never prescribe that anymore in the UK. Oxy or any other opiate? HAVE AT IT. Maybe Ill fake a sudden inability to get into an MRI machine without a sedative and see if that works.
It was 62F here today and glorious. Ive got the back doors open to air out the house a bit.
emac - Im so sorry you ended up back in the hospital, but the other ladies are right, now is the time to find that second opinion or more expert opinion, while you are more comfortable and can breathe. I wish you well and hope that your next drug helps dry all this up! Six pounds of fluid!
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Emac I am happy to hear a pulmonologist will be on board fairly soon, they are experts and can give the right info or suggestions on what to do next, will be in your pocket.
Mel, I am glad you are feeling better, so hard to be so sick.
I have been craving mcdonalds all day so ordered a few cheese burgers, two of which I will eat for supper, rest being used in other ways, using the buns as well. I can stretch them for a few days as well. Will not be shopping next couple of weeks so I think the budget will not mind my purchase.
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Sending All lots of love this week ❤️
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Emac, I read of others that had great results on Enhertu in your situation and I know it’s worked really well for me. I hope you get quick relief.
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emac So glad to hear you are relieved of all that fluid, sorry it has meant a hospital stay. Hoping it's a quick stay and you will continue to feel better. Great news that you have your appointment in place, perfect!
shanagirl Geez , quite the list isn't it! So glad you have some peace of mind knowing these are side effects you have been dealing with. Still stinks but we all know the panic when new symptoms pop up.
sondraf For the love of God, why are some things so hard sometimes! Faking claustro with MR sounds good to me too. Usually they are not that stingy with muscle relaxers, I understand the opioids etc. My DH always has a stash of Robaxin with his back issues. Well I hope you get something that helps.
sunshine Hope you get an idea on the copay soon, that's quite a broad range. Ugh yes the insurance crap and the SS office…oh what a joy lol. Enjoy your trip to the desert this weekend. We all totally get enjoying company but sometimes it's just to much physically too, depends on the day.
May all here have a restful evening.
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Hi everyone. Quiet evening here. Enjoyed watching the birds and squirrels. A mockingbird showed up at the bird bath. DGD's cat was laying in wait for my favorite squirrel. It's a scrawny one. Barely a tail, but it sits in the tree and stares at me. I took a broom out with me and Rockstar beat feet when I yelled at him.
@emac877 I had a pleurex cath right after I was diagnosed with stage 4. That's a year ago! Ibrance dried up the pleural quickly (3 months) and I had the cath removed. Today my O2 is 98 per cent and last scan listed mets in skeletal only. I'm praying for you that Enhertu starts doing some magic!
@shanagirl Dang that list is so long I almost fell asleep reading them. I just discovered last night that the muffled, tinnitus and popping in my ears is a side effect of chemo. Maybe Ibrance is not listed as a chemo, but it sorta is. I hope you feel better and when the warm weather comes, you get out and about.
Hope everyone has a peaceful, pain free evening. In pockets for scans and all life's needs.
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Hello Ladies ~ I’m feeling better everyday from Covid. But this congestion and cough won’t let go of me. Ugh! I have begun the planning of my mother’s celebration of life dinner I’m planning. I would have done it sooner had I not gotten so sick and DH as well. I’m having around 20 people and I rented our historic train station for the event. I had my daughter’s reception there. It’s lovely. The cost adds up quickly. Can’t believe how much things cost, but I’m enjoying planning it for her. She’d love her two cousins coming in for the dinner. All of the others are gone now. I’m having for appetizers. Chicken fingers with sauce , bruschetta crostini. Main course. Chicken Marsala, or penne Al a vodka pasta, Caesar salad , dinner rolls , Dessert , mini cannolis and a cookie assortment platter. I’m having it catered and there will be drinks of wine, beer and water and some soft drinks. I’m going to bring the urn so she will be there with us. And I’m going to try to get as many photos as possible for a board. It helps my sadness to plan this. She would have loved it. I hope she’d be proud. I miss her. A lot everyday. But feeling better has put a sense of relief back in my step. This memorial is April 6th. So I have time to plan. Gave everyone as much notice as possible. Plus alot if weekends were booked already. And wow how fast that happens. At this venue. It’s all wood and beautiful floors!
This is the place it will be perfect. I’m going with white and silver colors. No dingy black.
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Mel This truly makes me smile and your mom is already so proud of the wonderful woman she raised! Sounds like a beautiful celebration of life with the details, food and your family there. Your mom's heart will be overflowing with joy. Glad to hear planning this honor is also helping you heal too. Hugs🤗
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Mel, this is so wonderful and sounds like it is really good for you and helping you through this very rough time. What a nice tribute to your mother. I'm certain she would be exceedingly proud of you!
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Mel, I really like the colour ideas you have in mind, focus on your energy while doing the organization for dinner as well. Will be an emotional but also healing day remembering your mom. Glad COVID is clearing up and that last bit of congestion will come, perhaps an expectorant would help with that. In your pocket sending energy your way.
Sondra, I remember when I first started MRI I felt scared but I was also newly and officially dx Stage 4. I made them put me under for the last MRI before brain surgery. Eventually I started the 478 breathing and it relaxed my body, I started sleeping finally, that was a couple of months after. I don't know why relaxing drugs are not given either. In your pocket as well.
Have my OT app't so bit of a tidy up going on here. Figuring out what I want to do with my cheeseburgers ordered from McD's. I wanted the seasoned beef, planning to freeze a couple as well. Might put them in my waffle maker and make up some eggs. To go with, we will see. Also wanting some pasta of some sort, not sure if I want the stuff in the freezer or the other stuff, we will see what I come up with, could possibly take part of a burger, combine with beans or lentils, put a small amount of pasta in there. Would be pretty good. I may make a pancake inclusive meal tonight, we'll see. My plan is to add more seasoning I like into the mix and see what happens.
Also got my second mini griddle, only reason I did get a full size one was because there was nowhere to keep it in my tiny kitchen, the smaller stuff is in their boxes after cleaning on the stove. Looks crowded but works just fine. Two wee griddles work better in a small kitchen and they are only 350 watt so not going to flip circuit if using both at the same time. Over the weekend, will be putting my boxes in a recycle bin and take it out for garbage day. My wee garbage can was good as it was collected. I also like that it was durable enough for me to toss down the stairs since not comfortable carrying it and heading downstairs. I bring it back in the house as I am not trusting of neighbours and disinfect. My garbage does not smell like garbage at all after wiping container out with soap, enzyme and some alcohol to delete the smell.
Hope all have a good day and in pockets where needed.
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I needed something quick so just reheated a cheeseburger, will work on get buns and burgers pulled apart for different things and into freezer for stuff not being used yet.
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mel, the location you've chosen for your mom's memorial is beautiful. She would be so proud of you (as she was in life).
I did something to myself last night. I felt like a broke a rib while I was sleeping or trying to turn over in bed. It hurt to move the rest of the night and now it hurts to breathe and it hurts to laugh—so no jokes for now. If it still hurts on Monday, I'll probably get it checked. I hope it's "just" a pulled muscle…
On the positive side, I have an appointment with our insurance broker for Tuesday morning to discuss our Part B and the supplements we'll be getting. It feels good to be moving forward with that.
It's a beautiful day here in the desert. DH has a list of things to do, but he likes doing these jobs and he's good at them.
I hope everyone has a good, pain-free, hassle-free, SE-free, and whatever else-free weekend.
Carol
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That all sounds really lovely Mel, and like you said, you have plenty of time to plan and enjoy the planning, considering what your mom would have loved.
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Sunshine, in your pocket for the possible muscle strain in the rib area, that really hurts for sure.
Good visit with OT, practiced getting up from a fall into my chair, it took me a while to push up. She told me to do more sit to stands throughout the day, keep doing bridge pose and keep working out in bed as well as bend leg to get more power to the hamstring. She does not want me to try to practice getting up myself. I also want to find a wall push up as having some arm strength working with arm push strength would make it easier to get up as I could use the arms to push along with. Could also simply call the hospital and ask for help getting up. Good session.
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Mara, sounds like a good visit. One exercise I was told to do was hold onto the sink with feet out a little ways and do sort of a push up with my arms. It is supposed to strengthen them and it does work. Just start small and only do three reps three times at first gradually adding reps and moving feet further out.
Mel, your dinner sounds nice and should be good for everyone.
Sunshine, sorry about the rib pain. That hurts!
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emac - praying you get some answers. Seems like you’re on Merry-Go-Round but not in a good way😢.
Mel - what a beautiful celebration of your dear mother’s life. You have truly been thoughtful in sharing her ashes for remembrance and then planning the celebration. In time you’ll reflect back on these things and feel much contentment.
Sunshine - sure hope things improve. Try a heating pad. And some ibuprofen if you’re able to take some. I pulled a muscle between my shoulder blades about 4 weeks ago while sleeping. It’s better but still hurts.
Mae - have a fabulous birthday weekend!🥳🥳🥳I feel like I just won the lottery! Had to reorder my Ibrance and my copay is now $0 for the rest of the year. Our insurance guy put me into a new plan that covers Ibrance so after my first high copay, $3400, I’m now covered completely. Last years out of pocket was over $13,000. That’s a tremendous savings. Doing the happy dance💃🏻💃🏻💃🏻💃🏻. When my hubs was working, we maxed out his HSA account so we entered retirement with a nice little nest egg. But without the change in plans, we would have used up what’s left.
Hope all you sisters find reasons to smile this weekend. Peace to all. HUGS!0
