My Husband, My Life, My Love, My Family, My Cancer
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I also tried to work. No deal. I so admire you as well. I agree BooBoo we need to be engaged in something. Challenging task. But not strenuous in anyway. I've needed something for a long time. I need to not have cancer is what we all need. Thinking of you all
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I was going to try the volunteering thing again-- maybe the local neighborhood food pantry. But then the small progression happened, then the liver biopsy, then the PE. So I still do not have a "project" to do. But.. I did go to my church's ladies group study. And I am going to try in-person gaming with my gaming group. I guess the small stuff will have to be it for now. Will we change treatments with me? And what to, with what effects?
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Emac, I am also glad to hear you are able to still work. Helps keep the mind off the disease and glad you are stable.
I admit, wish I was able to work, even if it was just a small side hustle like a dollar store but I don't have regular energy to put into a job. I do a lot of moneymaking little things that don't give me a ton of extra money but probably an extra 200 US which is good for me in Canada. Helps me afford to buy gift cards for groceries etc or the odd dinner delivery. I am also thrifty when it comes to stretching household things like mixing dollarstore detergent or powder for laundry with the good stuff, cleans just as well. Add water to my foaming soap to get two containers instead of just one, half soap and half water, stuff like that.
I had my Pfizer yesterday. I will say I was super tired yesterday and slept a lot of the afternoon and evening. Never felt terribly ill, throat felt a little sore and my nose stuffy. I took Tylenol and one advil with each meal. Also took one loperamide to guard agains diarrhea though that never happened. Feeling better today but staying home since I get my Herceptin tomorrow. I did ask the nurse if I needed to skip this dose but she said it would have only affected if I had it before the shot, within 2 weeks. I am fine with that.
Glad I have my AC, going to be warmer than I like, my neckfan will be put to good use, might be time to bring an extra shirt when walking to the cancer clinic in case I get sweaty. Supposed to be close to 90 later this week.
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Yay Mara! You got your shot. Aren’t you glad it’s behind you? When the nice man who gave me the Pfizer shot was done, I said “That’s it”? He said “Yup”. I don’t know what I thought would happen, but it was pretty much a non-event. But once you’re all done, there is some peace of mind knowing that you won’t die from COVID. Brave girl!
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Moth, thank you for letting me know.
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I have to have to two shots for my covid. Pfizer. Got one already going back may 24. The day before my birthday. Some gift.
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Thanks Laurie, it is a good start. I get my 2nd dose Sept 6 unless it happens earlier I suppose. No real side effects with the first one either, felt a stuffy nose, dry throat and a chest pressure for one day. I took advil and tylenol with meals and today, still doing one little advil with meals and should be fine. Herceptin gives me similar stuffy nose as well so it was not so different.
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Awesome Mel. It feels so good when you can check that off your list. I know others are right when they say you can still get the virus after the shot, but it still frees you up a bit and I feel less anxiety about going out.
Thinking of you and hoping every day gets a little better.
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Mel, I for one feel better to hear that you will have your second shot. More protection against hospital stays etc.
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Thank you Booboo1 and Candy. I agree, I think work serves as a social outlet and a mental stimulator for me and that's a good thing. If I could quit I would, however, as it is physically breaking me at points. I don't feel strong, I feel exhausted most of the time. I fell asleep sitting up on one of my breaks last week. I have a good team around me for support when we have crazy combative patients or super heavy ones that need moving I am never short on help. I'm a part timer so I only work two days a week. I have run the numbers for SSDI and am being told I would need to pay for insurance out of pocket for two years before qualifying for Medicare. I just can't make the numbers work where I could afford that. I also hesitate to leave a department that has a supervisor who has been unusually patient with my situation and the amount of time I've missed. Here the Covid thing is winding down. We still have a few but not nearly like we were dealing with so that is not quite as exhausting also.
I have a call in to my doctors office about the scan result. It's amazing news, I just want to hear it from her before I go shouting NED from the hilltops! Even if it's only a brief reprieve I want to make the most of it. I imagine I will stay on the meds and have decided that the side effects are a welcome trade off if I can stay stable for however long I have.
Mel - I hope the Xgeva isn't too bad today and you get some rest and know that you are so loved here.
I continue to pray for this whole group. May we all have better days ahead and may Covid and this pandemic go back to Hell where it came from so that we can have a semblance of normal lives again. Hugs to all of you
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yay emac, hurray for you!
forgot to tell you guys dh & I went for a quick boat trip on Sunday at dinner time (we are about 5 mins away from a boat launch where we can drop in the ocean). First trip of the year. dh did all the prep the previous weekend, "un-winterizing" the engine etc. Everything was great. I wasnt feeling that well in the morning but once he'd planted the seed that I could get out on the water for a couple hours I couldn't let it go & hauled myself out.
We launch no problem, set off from the dock & the engine died! And would not come back! That traitorous Yamaha bastard! It was windy and an ebb tide and we got shoved onto a sandbank and ran aground LOL. Eventually got rescued and towed back to the dock by a jetski. There's a long boardwalk there where people go to watch the launch & trailerings mishaps (it is very entertaining, esp on windy days & esp when people haven't backed up with a trailer before), & we had a whole audience watch us run aground, paddle around like maniacs for an hour trying to set free with oars, try to set an anchor but it was so muddy we just dragged it, & then finally we got rescued.
We had our picnic at the dock and eventually trailered up and went home. We hadn't even gone more than a couple hundred meters LOL
My poor dh hurt a muscle in his chest trying to get us off the sandbank but you know I actually sort of had fun. I said to dh that was probably the longest I had gone without worrying about cancer. And I had a plan B - the shallows where were stuck go to the shore so I figured if I got bored of this whole thing I'd just grab my backpack, abandon ship and head for the shore without looking back. It's an old boat that used to belong to dh's parents & kind of belongs in a junkheap so I'd scuttle the thing if necessary lol.
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emac- Yes, the insurance is a big factor. Crazy that our health insurance is tied to our employer. And an individual plan is so expensive. They are trying to get the laws changed so if we qualify for SSD then we can get Medicare at the same time, instead of waiting 2 years. But who knows if that will pass into Law.
Moth- What an adventure!!!! But you forgot the cancer for a bit--- that was worth it.
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Moth - that little adventure sounds like it did you a world of good because it comes through in your post (compared to another a few days ago). I hope the next time you put the boat in itll be fair seas and a working motor!
Emac - I think that is the coolest thing to get to NED, and I don't blame you for wanting to hear it from the horses mouth so to speak! With bone how does that work like it just doesnt show up or its sclerotic or what?
Ladies taking Pfizer - I don't mean to freak anyone out, but apparently the second shot can be a bit more troublesome than the first, although its certainly not guaranteed (unlike AZ which it seems everyone gets whacked bad with side effects with the first shot). Other Half got his first Pfizer last Friday so I feel a lot more comfortable knowing hes going to start getting some protection here in the next few weeks. Although given how much time I've spent at the hospital lately Im probably more the house Typhoid Mary than he is.
Scan yesterday went about as calm as it could have been, I attribute that to going early in the morning. I think I may ask to move up my monthly appointments a few hours earlier so its less of a chance for biochemistry to get backed up with bloods or the machines to break down and gum up the works. Results on Monday, Frankenboob continues to get squishier and no other pain to report. Bit of a cough has come on the last few days, but its been raining like mad here, our garden has exploded, and I get hayfever coughs this time of year from postnasal drip.
Vets are finally doing vaccines again, so we've trucked the poor cats down to the vets for checkups and shots (they got to Uber and not Bus). Unfortunately they had to start new courses as their old sets were out of date, and new UK pet passports issued as their EU pet passports are apparently no longer "legal" cause Brexit. Who doesn't love bureaucracy?!
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moth: well that was an adventure wasn't it? A good story to laugh about -- later!! Wasn't last night's storm amazing?! I am glad I woke up. It has been a very long time that we have had such prolonged and loud thunder, sheet lightning, winds, rain....Even with the venetian blinds closed and my eyes shut I got that flashes of the lightning. I actually enjoyed it until I worried about the veggies I had only put in the ground a few days before. This morning I discovered all was well, veggies still standing and flowers in their window boxes.
emac: YAY YAY and a Happy Dance for NEAD. I am sorry insurance issues means working longer. I retired before my DX and was loving it. I am glad that I never had to make cancer a decision in working or not working. As a Canadian I am covered no matter what. I liked my job but after working since Feb 3 1969 (but who is keeping track?) I had decided I had done my part for Queen and Country. Ha ha. It was not the same employer all the time!! Are you shouting from the rooftops yet?
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Moth - Oh man, what an adventure. I'm so glad you guys got rescued!
Candy - Yes, I am following that law and hope that it does get passed. That could change things for me although I do still feel work is good for me, maybe just on-call if I can work out insurance and disability.
SondraF - I took both the Pfizer shots and had a nearly non-existent reaction to both. My arm was a bit sore for several hours and on the second shot I did feel like I was coming down with a cold for the better part of the afternoon and then I was fine. I don't know if the Moderna is available in the UK. My parents got the Moderna shots and had only some mild arm soreness from those. In terms of the bones, I do have sclerotic areas that show on the CT now but no active uptake on the PET scan.
Elderberry - Definitely shouting! LOL. I know the Canadian system runs a bit different and I can certainly see some of the benefits too it. It would be great to have more affordable/accessible coverage here. I think most Americans agree with that but it seems we are not yet sure how to do it. As much as my job is exhausting I do still feel like I am able to work and I enjoy what I do and most of my coworkers so that does make the challenges a little less challenging.
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emac, congrats 🎉
Moth, sorry about the boat but hopefully you still had a nice time getting out of the house.
Our houseguest brought home a baby starling a couple weeks ago (nest was downed by wind) and has been a good bird dad. Here’s the little thing, we don’t know the gender.
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True words Mel, good quote.
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Well, supposed to be stinking hot here. Not especially humid yet but it is coming. Going to wear my hat and neckfan to and from the cancer clinic. I feel funny in the hat but it will keep the sun off my face. I personally am not a fan of superhot weather but it comes with the area I live too. Oh well. Hopefully DB comes over to put my AC in as the nights will be warmer too. I do have a window fan which froze me in bed last night since it was still cool but looking for the humidity removal.
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Good morning friends - love all the updates. Moth - Murphy’s law that the motor would die. We use to live on an inland lake and boats are notorious for mucking up plans. But it was a good way to focus on something else.
Hub’s meds helped him get out of afib for about a week. But it kicked in again, thankfully pulse was in normal range and is slowing increasing. He finally has a date for the cardiac ablation on June 2nd.
Our oldest daughter and her husband are coming to visit this weekend. Have not seen them since thanksgiving 2019. Can’t believe it’s been that long. So grateful that the vaccines have afforded us a return to a more normal life. We are still wearing masks when out and I still refrain from going out. But it’s nice to have things open up.
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Glad to hear your husband has a date for his ablation. In your pocket s for that and glad that you are able to see your daughter and husband as well.
It's funny, I had my first Pfizer shot monday, felt a little off that day, yesterday was not bad, just tired and today feeling really off. I even cancelled my Herceptin which would pile on the fatigue. Asked if we can skip it this time and do it again 3 weeks. I don't feel terrible, but did not want double the exhaustion considering I have not done anything but sleep.
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I was just reminded how fleeting time is. I saw some home movies of when the kidswere two and three years old. My heart swelled with such a feeling I've never known. A desperate need to go back to that time where it felt like they would be little forever. Or I would have many days of playing cape and princesses. Matchbox cars and squishy ceiling stars. That time is forever gone and it went so fast. Their little hands needing mine. Their little legs running so fast as they could carry them. Little angel wings for the pool. My life was wonderful being mom. I would go back. Thank goodness I wasn't sick for one minute of their being little. I didn't find out until the winter after my son graduated. Then my step son two years later. I've seen bad family times and good family times. But I love my little family. Seeing those videos makes me feel such loss. But not from cancer. From life. And living. Those kids would have grown up either way. I would have gotten older either way. Adding cancer just makes it harder to love each day sometimes. Mental torture drains you. Then that drains the physical. Those videos really got me. I'm growing older. I'll be 51 may 25. Sounds old. But sounds young also. Strange. How things are.
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Micmel, can you spin that nostalgia into an appreciation of the mostly wonderful life you had and will continue to live? It’s not always easy but perhaps you can start planning a few covid safe, low energy activities to look forward to. I hear you but I’d love to see you report back to us with something or place that brought you happiness.
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Emac - that is awesome news but I understand that tentative feeling of wanting to be happy and relieved yet a little hesitant because life has handed out some nasty surprises lately and what if this is just one more of those nasty ones? Have to wonder how bad things really are when we are suspicious and cautious about good news. I hope you get the all clear and feel that you can enjoy the good news as authentic.
Moth - I hope you are a super responder! I must admit that while reading about your seafaring adventure the tune from Gilligan's Island was playing in my head. How kind of you to provide afternoon entertainment for your fellow Vancouverites. Hooray for being rescued.Mel - you hit on a note I really identify with. Home movies of our daughter as a baby and little girl. No. No. I cannot watch them. Cannot. I cry and cry and cry. Hub looks at me like I'm bonkers, which I probably am, but I just bawl. I can't watch them. I can't describe what I'm feeling but...no.
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Mel, I have video of my Mom's last birthday in 2018, last time we got together as a whole family before she died. I cannot watch that either unless I want to go on a huge crying jag which most often I don't. Pictures of her don't make me cry but that does. I keep the vid but have no desire to see it.
My DB and SIL came and set up my AC unit in the window so it was nice to have overnight does a good job in the bedroom with the door closed and I can cool the living room area with a high power fan, A big Vornado, worth every penny.
Still pretty tired today but if it is not too rainy, will try to get out for at least one walk, can't sleep the whole day again like the past couple of days. I did call and cancel my Herceptin as I also get fatigued with that and did not want to pile up vaccine fatigue and Herceptin fatigue together.
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Mel--- Like Mae said, I wish you could find some happiness now. Do some Covid safe, low energy activities now. Report back to us that you spent the weekend doing ___ or got to go ____ for the afternoon. I did not have children and I too am 50 years old. I do not regret having children. But, my dreams at night are about my old life. Last night I dreamed about my favorite job I had when I was 20. The dream seemed so real. I could picture the old job in detail including the old work crew. Kind of sad when waking, but....
I am looking forward to my outing this weekend to do in-person gaming with the group I have been Zooming with. We are going to meet at one of the members house and have snacks and game. Small stuff now days. But still something to look forward to.
Today I have a telephone visit with my MO to discuss biopsy results and next plan. I will report back this afternoon.
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Okay, I decided to look for things I could do from home that are not expensive and look fun to try. Here's what I came up with:
- Make jewelry (Pinterest)
- Learn Yoga (YouTube)
- Write a Book or start a journal
- Learn Calligraphy
- Have a spa night (Mel, you and your daughter might really enjoy this)
- Start a puzzle
- Genealogy (discover your family history)
Would anyone else like to contribute to the list? Not all of these will appeal to everyone, but it's a start.0 -
booboo, I love puzzles! I packed them all away last year but once you get back into it, it’s so much fun, occupies your mind and gives you a great sense of accomplishment.
Other suggestions are gardening, cooking or some light redecorating.
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I bought some adult coloring books and cool pens/pencils a while back. Turns out it was too stressful thinking I would mess up. I gave them away. I do like knitting though. I'm not an expert, by any means, but I like making scarves, dishcloths, and dish scrubbies. If I use yarn that isn't too expensive, then I don't feel guilty.
Right now, I am working on a scarf for my sister. The yarn wasn't cheap, since it's silk, and I've had to rip it back a few times, but I'll give it a go. My sweet husband said to look at the expense like I'm taking a class or going to school. I'm hoping I can do this - the pattern is a little more complicated, but fortunately there are lots of You Tube videos on both the pattern and how to fix my mistakes.
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Booboo- I tried the yoga with YouTube videos. I am not a very good exercise person and it is hard for me to get into a routine. I do not have the self-control. But, it is a good suggestion. And I have not given up on it.
I have thought about the genealogy topic before. I have not pursued that yet. I think something like ancestry.com has a fee, but my local library has a genealogy dept and that would be free. I think of doing something like this in the cold, winter months. Warm at home, on the computer with pen and paper, and researching. And it could definitely be a time consuming project.
I purchased a filing cabinet and that inspired me to organize and shred old documents. I like organization and so that was right up my alley. And felt good when it was done and I was more organized with my important papers.
I have a friend that just cleaned out a closet of hers. My closets are all done, as I did that when I first retired. But that would be an idea. Take 1 closet at a time and go thru old clothes to donate.
Like I said, I like to organize.
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