My Husband, My Life, My Love, My Family, My Cancer
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My DH would get annoyed with me. He never goes to the doctor for anything. It has to be bad for him to go. I can't believe all of my Christmas was spent dealing with covid. I had started shopping so long. Ahead of time and it was an easy year for that but I didn't get to see my son at all. It sucked. We spent the entire time taking care of covid son. It wasn't fun. I'm still Leary to use that bathroom he used. Even though it been wiped down. I get so afraid I will get it. Just because my son got it doesn't mean the rest of my family Can't also get it. Or maybe even god forbid my son gets it again dealing with his work. He went back today. So it's officially good he's through it finally. What a pain that was. I don't think anyone would enjoy that. No way hoseay! Hope all is well for you ladies tonight I'm going to try to get to bed again earlier. Last night was awful and I drank too much water during the night and it wasn't pleasant having to go every hour. Annoying. I get so thirsty. I drink triple 24 ounces of water daily. Like nothing. Some days more. I love it. My daughter bought me this flask for Christmas and I put the water into it when I go to bed and when I wake up in the middle of the night parched. That flask has ice cold Water in it. It's awesome. I love it. I think it's called hydro flask. I'm great product. For sure. Hope everyone will sleep good.
Haven't heard from Minnie in a while. I hope she's doing ok. Lynnwood. Same.
Hello to Chicagoan!! Good night!
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Morning all. 8am here.
Today I have my monthly Lupron shot and Port flush (local hospital). No big deal, but I just don't want to go. You all understand. Just tired of having to do it. Every month. Plus having to get out in the crowds with the Covid situation. Then this afternoon I have Zoom appointment for Palliative Care. This is my 2nd appt with them. Last time was more of introductions and letting me talk. But with the stable/no change in treatment scan on Dec 21st, we really don't have anything new to discuss (I don't think). But good that I am established with them for when things do change. And good it is per Zoom. I can stay in my house away from Covid, and not have to travel the 2 hour one way/ 4 hour trip.
Hope all are doing ok. Kittykat should be finishing her Tuesday by now. Hope you are doing better. Any plans of discharge home?
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Candy, the maintenance of cancer alone is annoying. Never mind everything else. That goes along with it. I'm sending a hug. Hope it goes quickly. My port was clogged last time I went. Had to have a port buster solution applied. It works. But you sit longer. Hope yourein and out.
Nothing exciting here today either. I'm Already bored. I have to go to cvs. But I don't feel like going into covid environment! What a mess this is becoming. Unreal. Like a Stephen king novel or something. Geeze.
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Hi Candy, yes its almost midnight, but I know they are going to come and do obs soon so I'm just waiting. Hopefully the test results they have been waiting on will come in tomorrow or the next day and I'll be able to go home with a treatment plan soon.
It does get tiring, scans every 3 months, bloods every 2 weeks lately and now stuck in the hospital.
The only good thing about here is we are covid free apart from returning overseas travellers but they all have to quarantine in guarded hotel accommodation for 14 days and have a covid test as well.
Its good to have the palliative care team on standby, even if they don't seem to be of much use at the moment.
Well the nurse has been and gone, I'm free until 5am, night all.
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Well I am home.
Mel- Yes the maintenance cancer stuff is tiring. I take it in stride, but I think of "healthy" friends and then how I have to do all this. Just a constant reminder of how I am different from them. My Port would not give blood today. Flushed ok, just no blood return. This is a chronic problem for me. I "tasted" the saline flush so the nurse said we would let it go this time. If it doesn't give blood next month we will give the Draino stuff. I have had to have it before. Yes, just more time there as you wait for the clot buster to do its work.
Yes, this time in our world is like a Stephen King novel.
Kittykat- Hope you sleep well for the rest of the night.
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I had stuff to take back to the mall.... so I finally got off my rear end and did it. I went alone and after I took back the clothing, I went to bath and body works and stocked up on wallflowers scent cartridges. I am addicted to having them and I was down to two of them. I have two dispensers and I don't want to run out. I love plugging in a good smell to fill the house with. So I feel like at least I'll Get some money back. And I made the trip. I guess it wasn't much more than an hour really. But I don't go far on my Own too much. So I am proud! DH usually drives me. I just didn't want it sitting around anymore. It's so hard to find clothing that I want to wear. I don't go anywhere, but when I do I want to look half. Decent. Not like some paper doll patching an outfit on this twisted wreck of a body. I'm not giving up! I found two really Nice blouses and DH got me two Nice relaxing shirts. Which is what I live in. Sweat pants and long sleeve shirts. Even in the summer. Not if I go out, but the second I come home. I change into my uniform. (Sweats and shirt). But the mall was empty beyond empty. Weird. I am Glad though don’t want to be around anyone. Anyway!
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Candy~ my port is persnickety as well I never know what's going to happen. Sometimes I can't get it to work. Then I have to have the draino! (I forget what it's called) I'm sorry yours gave you trouble too. I have no veins, so when my port goes persnickety I'm in trouble if they need blood. I've even tried my Hands. It's really painful when they “think" they are going to get a vein. Poke poke poke poke, But as I've told them. They are not. Hope it works next time....
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Hi everyone, popping in to say hello & reporting for pocket duty for all scans this week! I finished rads yesterday & am still on my birthday high as presents and wishes keep arriving. I have been feeling SO good - no chemo since Nov 26 is no doubt the reason. The cough has been very tolerable recently so I've been doing things and sleeping well. We've had lovely times with the family - lots of board games and tv and laughing at memes and tiktok. We're such dorks - sometimes all of us in the same room but sharing stuff in group chat.
Happy 12th day of Christmas & Twelfth Night! I'm going to see if I can find the right needles to cast on a new knitting project while watching a Hallmark xmas movie on demand.
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I had to have the TPA put into my chest port last infusion and get the drugs through my arm. After sitting there for 30 mins while getting the infusion did work. Hopefully there will be no trouble on Monday the 11th for the port access. We will see.
Not doing much today, not feeling like walking, just sitting around waiting for deliveries from amazon. One more to go for today. The extra washer will arrive tomorrow. Looking forward to that and then have kitty litter coming thursday since my amazon mastercard gave me 20.00. I usually hate ordering so much stuff at the same time and stuck at home in case I need a grocery store. Oh well, not ordering anything else as I have two appointments next week.
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I’ve had trouble with my port from time to time, and one of the infusion nurses figured out that my port needs to be accessed while I’m sitting up. They also ask me to cough from time to time to get the blood flowing. Works like a charm every time.
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2nd Palliative Care Zoom appt done. I am so glad I found them. I feel I have someone in my corner, watching out for me, as things get worse (hopefully not for a long time). I feel I dominated the conversation, but they said they want to hear what are my issues. It was a Social Worker and a Palliative Care doctor. We discussed my lack of family support (I have a dysfunctional family) and discussed my chronic pain issues. They cannot really help my family dynamics, but they need to know them for the future. Doc prescribed a muscle relaxer last visit and I have not taken them yet (but I did get the RX filled). She suggested I try one (cut in half). And she suggested Cymbalta for chronic pain and depression. She said to let her know if I want her to send a script to my pharmacy. I am my own worst enemy. I just do not like taking meds. But I guess that is better than being labeled a druggie. We are doing next appt after my next scans--- March 22-- to see if progression or stable. So, for now, I am seeing Palliative Care every 3 months, after scan time.
Have any of you used Cymbalta for depression or chronic pain?
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We said our good-byes to Jeeves this afternoon. We are heartbroken. We felt blessed to have been given the name of a wonderful vet who provides home euthanasia. We were outside on our deck and were giving him his favorite food in the world - donuts (don't judge). This vet was amazing, and we weren't in a sterile emergency clinic at 2:00 AM like we have been in the past with our last Airedale.
This just hurts so much, as many of you know. We were thankful that we could choose this for him, rather than let him deteriorate to where he couldn't walk at all.
I keep looking and listening for him. It's too quiet - he must be on the loveseat!
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cymbalta didn’t agree with me. It made me feel confused and out of it. I didn’t like it. Everyone is different though. I was switched to Effexor. Read up on it and see what the information says. I only took it for a short time. It was too strong for me. Too high dosage I suppose.
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Too much going on, but trying to keep up.
Kittykat, lovely to have you here, shocker that you are still stuck in hospital, hope you feel better and get out soon!
Mel, as always you share your stuff and make us all feel human.
Candy, thinking about you as always and Mara’s positive vibes are always good to read.
Sunshine, no words for your boy....
Mae if any consolation I wonder if it’s stress with your DH? Mine has recently been sleepwalking, although he appears wide awake, I know by the bonkers things he says and the slightly wild look in his eyes. That and no memory the next day. Poor soul is stressed to the max and it’s mainly my fault 🤦🏼♀️
We might be living this shit, but our nearest and dearest are also suffering.
HNY to us all..
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Sunshine, I’m so sad for you. Hugs.
Candy, glad your Zoom call went well. I can’t comment on Cymbalta. I did take some muscle relaxers after my car accident in 2013. It made me very sleepy, so only at night. I don’t take them now.
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oh Sunshine I’m so sorry. I so understand the heart break. Of loosing a dog. A member of the family. I hope you can find happiness in knowing you gave him a good home. What a lucky dog.
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oh and sunshine my DH Made a batch of cookies just for tag. His last cookie is what he ate when they gave him his shot. So. NoJudgement here!!
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I'm so sorry Sunshine, its so hard to say goodbye.
Well, they have finally got the test results back, it was the Affinitor causing pneumonitis so now Sanjana, my oncologist, has to come up with a new plan for me. At least I can go home later today, finally. I can't wait to sleep in my own bed, not sure about venturing out though, its going to be 99 degrees today and over 100 for the next 2 after that. Thank goodness
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Kitty~I’m so glad you can finally go home. I’m sorry that your meds was causing your issue. I hope Your doc can come up with something mild for you! That’s super hot! Wow. It’s 34 degrees here. I would love to visit Australia! Amazing.0
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Kitty, Yay for going home!
Sunshine, Thinking of you on this difficult day and the days to come. 💕
Candy, That’s good to hear that your appointment with the palliative team was helpful. I can’t help any with the Cymbalta but the half pill muscle relaxer idea sounds worth a try to me.
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I wish you could all come and visit, I truly couldn't live where it snows, 59 is about as cold as it gets here in the winter. I went once for a holiday, I hated every minute of it. Give me the beach and sun anyday.
I've got a feeling IV chemo is next up for me, not particularly keen on that but I'll give it a go if I have to.
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Sunshine, I am so sorry to hear about the loss of your Jeeves. It does cut deep but sounds like a peaceful transition in a comfortable place. That is a very kind thing you did for him.
I am astonished at my cat Ava. I was listening to some Star Wars music on youtube and when it came to the throne room music between Luke and Vader, she was terrified. Her tail puffed out to about 3 times the size and she was absolutely terrified thinking something was going to get her from behind the television. She would not eat when I fed the cats until I put cat calming music on for her. Poor thing. I put some soft piano with purring and she started to calm down and ate and is relaxing more. She was actually shaking when I picked her up. Felt so bad even though I had no idea that music would scare her so much.
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Poor Lil kitty. Gave her a good scare. Funny how animals react to music. “ we ve only just begun “ by the carpenters makes my hound dog howl. It’s a trip!
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Morning here.
Kittykat- You should be home by now. In your own bed. You just keep that 100 degree weather with you. It is 29 here right now, and going to be around 40 today. That is the way I like it. Get some rest.
I just get frustrated. I have had disc issues in my back for years. An ortho doc told me I need a fusion surgery, but with the cancer I am not a surgical candidate. I had a small rotator cuff tear before the cancer diagnosis and was doing PT. Then the cancer and BAM stopped PT and concentrated on the cancer. That shoulder still bothers me-- trouble lifting up too high and hurts to lay on it at night. I have the RA arthritis and the doc stopped the meds due to my cancer meds. BUT.... due to MBC they will not do surgery. They will not restart my RA meds. Give her drugs-- muscle relaxers, anti-depressants. If I fall down the stairs and break an ankle, do I get surgery? I have MBC you know. Or a script for Cymbalta?
Feeling crabby this morning.
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Hi, Candy,
Just reading your post and how your docs stopped your RA meds, etc. Have you raised these issues with your MO? I know that docs like to keep in their lanes, but perhaps she could offer someone there who you could talk to, since it's a larger center. I don't get the cutting you off on RA meds due to having cancer. Perhaps your new MO can connect you with someone there?
I get the PT thing, because you won't want to be doing PT with the virus still around and you not vaccinated. But I'd try and get another opinion on your meds.
Sorry you're feeling crabby today. I'm right there with you.
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Sunshine - so sorry about your beloved Jeeves. He will always be part of your heart.
Candy - I have been on antidepressants since the birth of our youngest, who is now 34. Had severe postpartum depression and was then felt to have chronic depression. Started on Prozac, then Effexor now Cymbalta for 16 months. During all those years, dosages have shifted up and down and other meds have been added and removed as life’s challenges got thrown my way. Because of my severe back pain, my PCP suggested trying cymbalta so I made the switch. I will say this - despite being on a high dose, 140mg a day, the drug has done nothing for my pain. But from an antidepressant action, I am thrilled with the results. When I had my MBC dx in July 2019, I went off the deep end. It didn’t help that we were about to move from Ohio to Wisconsin and the house we were buying would not be done until the end of September (and lived with DD’s family w/our 3 dogs for 6 weeks). An increase in Effexor helped a bit but switching to cymbalta in September 2019 really made a difference in my equanimity and coping skills. Do not be afraid of these kinds of meds. You will not become a druggie. Your doctor will start you on a low dose and work with you to find what dose and drug ultimately works for you. Not every drug works for everyone and these meds usually take some time to work. Mental health care should be a required part of MBC treatment
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Hi BevJen.
You have a lot on your plate right now too. I hope your MRI is good news.
Yes, I guess I should discuss the RA meds with my MO or with Palliative Care. My local rheumatologist is concerned about the low blood counts since the RA meds can cause this too. That is why he stopped them. I was just diagnosed with BC and starting IV chemo, then the MBC and Ibrance. I asked him about it again this last Nov and he still said no. Maybe my new MO or Palliative Care would be different.
I wish Covid was gone and I would try PT again. Though I wonder what the therapist will say with the bone mets. Would they not want to do some of the treatments? Such as traction on the spine? Afraid they may hurt me with the bony mets.
I just am thinking about my issues-- disc and rotator cuff-- as mechanical. If I was not a cancer patient we would do some intervention. But with MBC all I am allowed is medical intervention with a pill. With those side effects--- constipation, drowsiness, confusion (as Mel said Cymbalta caused her). Not FIXING the problem. Grrrrr
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Goldens- I am happy you have found help with Cymbalta and the such. Maybe I do need something like that. I do have some depression and anxiety with the MBC. But the discussion yesterday with Palliative Care was the chronic pain. Maybe she was trying to nicely tell me she sees depression/anxiety when talking with me. I do think Mental Health should be included when you are diagnosed Stage 4. But also they should not ignore the health issues.
I know of people in their 80's that had knee replacement surgery. They were in pain, could barely walk. They may just have 5-10 years of life left, but their doc wanted them to live the rest of their lives without the knee pain. So... there you go. How about my back, my shoulder? I could have 5-10 years left.
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Mae I hope your husband is ok. I think I have developed a form of ADD - brain freeze due to covid & politics, I hope its something dumb like that.
Mel, your daughter knows you well. Lovely gift.
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CT results back. All in all, I think the results are okay, knowing they don't see my extensive bone mets or the cancer in my stomach. What I don't get is this is the third time they say they see severe constipation. I have been going every day. I am almost thinking now maybe it's something else. I'll talk to my doc about it.
Here is the impression. Any. thoughts or anyone who had them say that but it was something else?
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