My Husband, My Life, My Love, My Family, My Cancer
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Happy Sunday all. It’s misty and gloomy which is the way I feel. Had a videoconference w/NP for my spine doc on Wednesday. Before hand I reviewed in detail my MRI from December and guess what - I discover I have spinal stenosis in 2 places😡. I’m so pissed that I have to be my own doc and bring the dx to my medical team. The dx explains all my symptoms and now we’re going in a different direction for treatment. Referral to surgeon and orders for injections directly in area of stenosis.
As an update on my hubs a-fib, he is now on his 3rd MED to try and put him in normal sinus rhythm. He’s been on it for 10 days and is creating havoc w/balance. He fell 2x at our daughter’s on Easter weekend, ended up/skin burn to forehead. Stumbled into stones on face of garage on Wednesday, ended up with scabbed up nose. Yesterday made a quick run to store and I immediately knew there was a problem when he didn’t come out to help me. Walk in to find him sitting w/ice pack on his head. Ask what’s wrong - tells me to go into my craft room. So with trepidation I walk in, see my one craft caddy is on the ground, contents spread everywhere and then I look up to see this huge hole in the drywall where his head hit. Thankfully he didn’t hit a 2x4. He went in there to get something off the printer and again lost his balance when he turned. I’m in a state of anxiety and anger. Anxiety because of what is happening, but anger because he has not been completely honest with his docs. The nurse for his cardiologist called Thursday and all he said was the drug was causing him balance issues. Nothing about falling! Men🙄. So we had a long talk and I told him if he wasn’t up front with his docs, I would be. I know HIPPA prevents them from saying anything but it can’t stop me! What if while I was gone he hit his head on the counter and knocked himself out. This damn drug is playing havoc with his blood thinner med, making it extra easy for a subdural hematoma to happen. The hospital has been good about letting him just work until noon, which is when he takes the 2nd dose of the med and gets the side-effects, but I truly believe he needs to be on short term disability. He is so damn stubborn. He drops down his dosage this week and I hope and pray the side effect goes away. There is no way I can leave him alone now. Beyond all this, he’s still in a-fib, with a heart rate between 130-150. I know that is exhausting and puts a horrible strain on his heart. He’s in line for a cardiac ablation, but due to COVID, there’s a huge back up and it will take 2-3 months b4 he can get it done. Thanks for a place to vent.
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Oh, Goldens, I'm so sorry to hear the issues your husband is having. Sorry, but not surprised. My husband would be exactly the same. I swear he's going to die of stupid. It won't be a disease that kills him, it'll be his stubborn refusal to get whatever it is checked out.
This is a man who was bitten by a black widow and, instead of going to an emergency room, calmly pulled out a pocketknife, sterilized it and cut out a one inch chunk of his own forearm. He then squeezed out about a cup of blood into the sink (which he figured would be enough to ensure the venom was gone) bandaged it up and went about his day as if nothing had happened. Urghhh. Sometimes he drives me absolutely bonkers.
You can add me to the scans list this week, Candy. Having my dexa for osteoporosis and an ultrasound of a new lump I found on the top of my right breast. I'm hoping it's just my truncal lymphedema or some residual fat necrosis . Then on to an ultrasound of my thyroid and parathyroid glands. Yippee. Lucky me.
Will be thinking of everyone who also has scans and hoping for the best possible outcome for all
Trish
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Goldens, I am sorry to hear about Hubs. Managing men can take more attention that one would think!
Trishyla, Isn't truncal lymphedema fun? All the swelling and lumping and pooling and oh my god what is happening to my body? Like age isn't bad enough, now this! In your pocket and hope everything turns out to be nothing.
Riding along to all appointments and scans and tests and haircuts if anyone is lucky enough to get one. I had a real haircut last week after cutting my own hair during this covid craziness. Watched a few Youtube vids and figured I knew what I was doing. No. This was wrong thinking. So I get in the chair and she says, oh my, you have a lot of hair and it's pretty dense and pretty blunt and heavy (words most often used to describe my ass, blunt and heavy). Yes, I said, that is all my own fault. She did a great job of shaping and thinning but then fell apart at the bangs. It looks like a grade 2 student hacked at me with a pair of those useless, blunt nosed scissors you get in grade 2. I could have done these stupid bangs myself! But you know what...I don't care! Normally I would not go to town looking ridiculous like this. But now, I don't care. Weird. So I ride along with everyone who may end up with stupid bangs. High risk stuff, haircuts. Hugs and white light to all.
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Booboo, I hope the dose reduction helps and you can reschedule your trip soon. Your family builds you up. And grrr about that long wait for the doc.
Runor, your poor dog - glad he came out unscathed
Kittykat- cute pre-skate pic! My last experience on (ice) skates was not good, so they're off my list for good. Lol
Dutchiris, hope you're feeling a little better.
Goldens, how frustrating! Both having your docs not read the scan reports and your husband's "balance issues" and for all that the med not working.
Trishyla, you made me laugh talking about your husband's going to die of stupid. OMG about the black widow bite!
I had a nice day out with a friend today, lunch and a little shopping. I didn't get the pair of jeans I wanted, who knew the dressing rooms were closed?
Pocket duty with Milano cookies for all who need it.
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Thanks SeeQ. For me, it’s all about QOL. I don’t want to live longer if it means I can’t enjoy it. Laying in bed or feeling sick to my stomach is not living. So hopefully a dose reduction will work.
I’m in pockets too for those who have scans, etc.
Goldens, you and your DH are in my prayers.
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hello ladies good morning. My precious dog Deeohgee isn’t doing good. He’s 12 , and the vet believes he’s starting congestive heart failure and there’s nothing that can be done for him. He’s coughing a lot and I am a total mess. I’ve had this dog since he was 8 weeks old. I’m literally devastated because I can clearly see the slow down. Like over night. I just lost tag. I’m so worried and saddened. Enough for us all and all the crap we go rheough
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Oh Mel, I am so sorry to hear that Deeohgee isn’t doing well. My heart aches for you.
In pockets for those having scans, appointments, etc this week.
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Trishyla- You are added for pocket duty.
Mel-
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Mel
I don’t post here but I do read every few days to see how everyone is doing. You are an amazing group of women. I am so sorry about your pup. However our dog was diagnosed with congestive heart failure at 12. Our vet put her on Lasix and she did well. After a couple of years she went on to have peritoneal drainage every couple of weeks. It was easy on her and she trotted in to her vet appointments happy to see them. She lived till she was fifteen. We adored her and when it got difficult for her we let her go. But she did well for many months years. Don’t give up hope yet. Also reduce his salt intake it really helps. Sending you the biggest hug to comfort your big loving heart. Ps if I can help in anyway with info just message me.
Keeping you all in my wishes to the universe for successful treatments and less sucky side effects. Didn’t mean to intrude on your living room but you made my heart ache Mel.
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I've had a hard time since abraxane on Thursday. Friday & sat I was napping but still managed to walk almost 6 k each day. By sat night I was pulling out the hydromorphone. Horrible bone pain + fatigue. Was in bed all day yesterday. Haven't used the hydromorph yet today so guess I'm a bit better.
Very discouraged though and just sad. This sucks
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moth- Gentle hug from here
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Long time reader, first time posting here since I was diagnosed with MBC a few months ago.
Micmel - I’m sorry your pup is not well. My pup is almost 14 and I’m worried that she is on her last leg. She used to be very active and she has slowed down quite a bit in her old age.
Moth - I had Abraxane during my first round withBC and I still remember the bone pain. I’m sorry that you are hurting. Gentle hugs.
I’m in for pocket duty. Hope everyone likes chocolate covered pretzels.
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mel: I am so very sorry about your beloved pooch. They steal your heart, then break them. When my beloved Leila died I got rather drunk and bawled my eyes out for hours. I still miss her and it has been years. I had several cats over the decades but she was very special.
moth: giving you a virtual hug. I hope the pain situation improves. I understand the sadness and discouragement. We are all here for you.
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Mel, I too am sorry about your dog, hard when you know they are not well, as bad as family being sick.
Moth, I am also sorry that the abraxane is knocking you back so much, hope it eases soon.
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Moth - I am sorry you are in so much pain, it is a stealer of joy. But you walked 6k?! That is amazing! I hope the pain eases off and you can get out in this gorgeous weather again soon. (at least it's gorgeous here, cold but bright)
Mel - old dogs break our hearts. Wrapping you and the good boy in a gentle hug.
I am waiting for the phone to ring. Take it with me everywhere I go. Trying to keep busy to divert my anxiety but it's not working. Freaked out when I managed to go to the bathroom after a few days of constipation which set off more bloody discharge. Of course my mind goes, oh my god I have bowel cancer and cervical cancer and they're all glued together in there and I'm a dead man walking. Some times I wish I could reach into my skull, toss my brain on the lawn and hit it with a stick until it quit those horrible thoughts. Enough already!
I am ready for pocket duty, hugs, white light and any coco balls that anyone is bringing.
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Mel - I hope and pray some meds can help your beloved pup spend more time with you. You do not need this pain. HUGS
So hubs fell again this morning while he was standing at the fridge getting some juice. Had some double vision as he turned and down he went. This time resulted in a trip to the ER. At least we know brain and heart are ok. BP was very low and heart rate was 150. The ER doc was tempted to try a cardio version but decided it was really up to cardiologist. So waiting to hear back.
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Mel,
Girl, you know I am here for you when that awful day comes for Deeohgee. But I’m hoping Giddyup’s idea to ask for Lasix would be a good next step to try so he is with you for years yet. I’m around if you want me to call you.
Moth, boy can I relate about Abraxane. Do you know what dosage you are on? I held out for awhile now on 200mgs. (I think that’s right) but I just can’t do it anymore, so she is going to reduce my dosage starting this week. We’ll see what happens. I hope you can get to a good place too sister.
Goldens, I am worried about your poor DH. He could seriously hurt himself with all of this falling. Hoping you get some answers soon.
Waving hi to Mara, Candy, Runor, Elderberry, Ilowen, SeeQ, Tanya, Mae, and all the rest.
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runor: I finally ventured out for a real haircut. I asked her to cut it all the same length - about 2 1/2 inches all over. She went at it afterwards with all that hair cream and spray and diffuser dryer so it looked like a "hair-do". She offered to see me again if it wasn't what I wanted. Just washed and rubbed dry with a towel it sticks up all over the place. I look like a little kid who had her not much older sister cut her hair with kitchen shears. I like it. So does my husband which really surprised me. So did my friend in Seattle who I Skype with on a regular basis since neither of us can cross the border. Back (waaay back) when I had elbow length, slightly wavy auburn hair I would never have imagined CHOOSING to cut my hair so I looked like an elf!
On a serious note: I think of you often. Worry for you. Sorry my worrying doesn't lessen yours.
Goldens: I hope what is happening to your DH will be discovered soon and treated. It must be very frightening.
To everyone else getting their scans done this week: HERE WE GO AGAIN!
Blessings
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To All: I guess this could have gone into the "Humour and Games" thread but I am here now and we all need to recognize ourselves and laugh:
*Coronacoaster:* noun; the ups and downs of a pandemic. One day you're
loving your bubble, doing work outs, baking banana bread, and going for
long walks; the next day you're crying, drinking gin for breakfast and
missing people you don't even like.ps. I, for one, would never ever drink gin the morning. Vodka? (shoulder shrug) I miss having my Friday night martini with extra olives
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Coronacoaster is an apt description. I should not be bothered by any of it simply due to the fact I was not a big shopper anyway but I think all of us are just getting tired, much like we feel with our cancer. It won't make me break lockdown rules or anything but it is a lot.
Vaccines are starting to go to 70 years old as we seem to be focused on age in a few places. I see my MO on the 28th and I will ask for some guidance about the vaccine and when to get it with respect to an infusion. If I go out, it is with older brother and his family since I am considered part of his household. Otherwise, I double mask in the grocery store or bus. A 3 layer surgical type mask with a fabric mask overtop of that. Should protect me some if someone sneezed.
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mara: my MO said "go ahead" I got mine the same day as my infusion. No problem. I feel better about getting one done. I hope BC won't make us wait 16 weeks for the second.
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Micmel, I’m so sorry to hear about your little old man dog, so hard and too soon after tag.
Rosiered, welcome and I do like chocolate covered pretzels
Goldens, The situation with DH sounds scary but I’m definitely hoping for some random one-time thing or at least easy to treat.
Runor, with you as always.
Hello to everyone else. Off to bed now, tomorrow is errands as wed/thurs will be busy and somewhat restless. I find that even going into scan day scan day calm, I’m always a little on edge when the techs and docs know something I don’t, fortunately, I only have to wait a few hours for results.
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I like the term Coronacoaster. That does fit nicely. I'm ready to be done with it and go back to normal life but then I had a coworker test positive this week. Fortunately she's fine, mild cold-like symptoms, but with my counts being low it always makes me nervous to get the news that one of us got it. We worked the hot zone together a few weeks ago but this past week I missed my shifts so I wouldn't have had much if any exposure at all.
It's been a bit of a rough week. My counts are up enough to stay on my meds but the drop presented a nice opportunity for an ear infection to get started. I'm just finishing 10 days of Amoxicillin/Clav antibiotics and I'm not sure which is worse, the infection or the cure. For the last week I have barely been able to eat, dry heave what I can get down and can't be very far from a toilet. I feel like the melted clock in a Dali painting! My ear stopped hurting. So there's that. I've already missed four of my shifts this month because I can only be up and around for about 30 minutes before I wear out and have to rest again. My last dose is tomorrow and I have a follow up with my PCP on Monday so I am in hopes this is all just antibiotic side effect and nothing worse and hope that it clears quickly.
Pocket duty to everyone with scans this week! Candy, I appreciate your list and helping keep us all organized with that. Hugs to you all.
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I have fallen way behind!
I try to take a break from the boards sometimes, for my mental wellbeing. But I'm not sure if it helps lol.
I find myself watching and reading things that are dark and depressing sometimes. Soft White Underbelly channel on YouTube is a good example. I might be trying to find something or someone worse off then me....idk. I'm weird.
I hope everyone is in a good place all things considered. ❤
I started back to work last week and I survived. I swear I'm expecting to be let go any day now though. I'm a corporate travel agent and we have been hit hard by covid.
Anyways just checking in. ((Hugs))
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Tangandchris, it is not weird to look into dark things, especially given what is on youtube. I watched Megan is Missing about a couple of 14 year old girls who go missing. I DO NOT recommend others to watch it. Though the actresses were not the age they portrayed, it was still a disturbing film. I also was recommended by youtube about a guy in 70's who got out of his car to take pictures of lions and they tore him apart. Many dark places that our minds can go. I usually delete my watch history at that point and put my usual search items front and centre.
I slept badly between 430 to 600 when I finally got up. For whatever reason, my mind decided to remember all my childhood and highschool bullies as well as guys who did bad things to me. Has nothing to do with my life now, just surprised my mind would cough up these gems to dwell on just before waking. Was unsettling as I largely don't think on these things.
Planning at least 3 walks, done the first one and only have some laundry to do. Nothing else I am allowed to do since there is a lockdown going on.
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I decided not to wait until it is hot for sun protection and staying cool, decided to invest in a straw type hat with a wide brim and also a neck fan to stay cooler. I would still likely get hot, but perhaps not turn into a total sweatball. Also want a little more skin protection besides just sunscreen and my UV sleeves.
i also made a great tasting breakfast meal of beefless ground, low cal and low fat, took part of a tacodinner kit, using a bit of the cheese and taco seasoning. I put a little water in the ground, mixed in some taco seasoning, threw on a bunch of black beans and tosted a tortilla, tore it apart and drizzled the cheese on top. Realized I could get a similar feel with my own queso. This will be something I eat and not huge calories either.
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Mel , I'm so sorry to hear about your poor Deoghee.
Goldens, I hope they get DH heart issues under control sooner rather than later, it truly must be a worrying time for both of you.
Runor, here for pocket duty whenever you need me, same for anyone else who has scans or infusions this week.
I missed my chemo today, it's always been on a Wednesday so I just assumed it would be tomorrow to keep the original schedule for the cycles so I got a call at 3pm asking why I wasn't there. I sorted it out and can go on Wednesday as I originally thought. I'll have to start writing it down on the wall calendar to remind me.
Waving hi to everyone who visits Mel's living room.
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Kittykat, I am the same, always on Wednesday for infusion and doc app't when I have one about every 3 months. I have missed appointments when I have not put stuff in my calendar too. Holidays also can alter the day of the week.
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This waiting. Good god. Waited last Thursday and Friday for a call that never came. Waited Monday and now today, Tuesday. No call! This is killer! And after everything is poked and peeled out, I will wait another 2 weeks (that's a rush, mind you, two weeks) to find out what's what. Knowing is hell. Not knowing is hell. I am really hating this right now. I know there is nothing to be said other than you all know exactly what I'm talking about. It is good to be able to say this among people who DO actually know. Because as much as my friends have been so wonderful, most of them do not have first hand knowledge. I pray they never do!
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Cross posting----
I have had pain in my left shoulder for literally over 3 years. In 2017, before the cancer diagnosis, I was told I had a small partial rotator cuff tear. I was getting physical therapy when I was diagnosed with the cancer. Life stopped. PT stopped. Priorities. The pain has continued, and worsened lately. So today I went to local ortho doc. X-ray shows possible bone tumors, possible avascular necrosis, possible stress fracture. MRI pending insurance approval. I messaged my MO nurse. Can they review x-rays or MRI for their oncology take on this? They will not review x-rays, but will review the MRI when it is done says the MO nurse. I asked about an oncology orthopedist---- they don't have one. HUM. A NCI/NCCN cancer center with no ortho oncologist. HUM.
Read avascular necrosis (if that is what it is) can be from bisphosphonates-- Xgeva--, like ONJ.
I feel my MO is missing my bone mets seriousness. I have posted here before that she concentrates on the liver, with CT's and MRI's of the abdomen, and does not monitor the bone mets. Last bone scan May 2020 didn't show much uptake, so are bone scans a good indicator for me? Last PET was Sept 2019.
I am frustrated.
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