My Husband, My Life, My Love, My Family, My Cancer

dutchiris

Runor...So good to hear things went well and th doctor didn't see anything particularly concerning for cancer. I'm hoping Ruben was the cause and your kicked him out for good.


Booboo...Here's hoping surgery improves things dramatically for you.

I am tired of waiting. I am tired of a lot of things. I want to give up. I am not meaning giving up on treatment but give up on trying to figure out what I am supposed to do with everything. I really don't want to go back to work. I don't want to talk to people about that and try to figure out the downside of that. I have more questions for my MO. I always worry I will bother people, even just writing this post.I don't know what to do.

Micmel

dutchiris~do what your limitations allow sounds like you’re putting a lot of pressure on yourself. I’m sending you a hug. Take a deep breath and try to gather peaceful moments. I always try to make myself talk medown. I could never go back to work. Just mentally and physically couldn’t do it.

SeeQ

Runor, this had me laughing out loud - I can so relate. " Also had several blood pressure readings that were cause for serious alarm but once I had my own underwear on it dropped down to good levels." So sweet of you to stop on the way home to give a hug where needed. Now, on to not-very-patient waiting for your (clear!) lab results.

Kittykat- yay for shrinkage!

Candy - I hope you're feeling a little more at peace today.

mara51506

Kitty Kat, just so happy to hear there is shrinking going on for you. Good news indeed.

Dutchiris, don't ever feel we will get tired of hearing about what you are going though or putting out choices or questions you may have. I also empathize with feelings of giving up. It doesn't mean you are necessarily wanting to stop treatment, just tired of having to figure all of the things going on for you.

I will say I have a feeling that some of the stuff I post about, walking, joy of laundry and surveys are such small potatoes, but I do like to talk about it with people. Not to be insensitive about more serious issues for people but it is nice to share things when living alone.

candy-678

So just an update- I have been messaging MO nurse back and forth and talking with ortho clinic about the shoulder.

I asked MO nurse about doing liver biopsy now versus waiting a couple of months. MO wants to do it now as the genomic testing (Tempus) takes 3-4 weeks to get a report. Then yesterday I got a message from MO nurse that the radiology dept wants an ultrasound to view everything before determining if they can do a biopsy--- I guess size of mets, and where at, and other issues such as blood vessels, etc. So we have to schedule the ultrasound next. Then, if ok to do, schedule the liver biopsy after that.

The shoulder--- I was going to do the steroid injection, but my MO said to do only if ANC is over 800. So.... have to schedule injection, get CBC beforehand, and cancel if under 800. Then would have to try again. So..... ortho staff and I decided not to do injection and just do PT. But.... I want to get the liver biopsy over with first before PT on shoulder.

Lots of back and forth messaging last couple days. Kind of tired of it all.

dutchiris

I am having a bit of a meltdown this morning and it's not getting better. Since I am still recovering from surgery, my usual distractions are not allowed.

I live alone in a sense. My 27 yo daughter with bipolar 1 disorder lives with me. Medication makes her sleep all the time and leaves her with absolutely no energy. So she refuses to take it. I can't really blame her for that. She has been have a meltdown for a few days now. I worry about what will happen with her when I'm not here.

Mara, I enjoy reading about your days. Please don't stop. I am glad you are here.

booboo1

Dutchiris,

I am so sorry that you carry the burden of your daughter’s bipolar illness on top of everything else you are dealing with. I have heard so many people say the same thing about those meds...they turn the patient into a sleeping zombie. I am starting to get so mad at the pharma industry in general. They create drugs with side effects so numerous you have to decide what is worse—the illness or the treatment. Ugh!

Anyway, I’m praying you will heal quickly and be back on your feet in no time. Take care.

booboo1

Kittykat, what good news! Hope it continues....

Runor, you crazy lady....I’m glad it’s over. We are waiting with you, so you have a house full of love and support right there by your side.

Emac, again, thank you SO much for all of the info about my surgery next Tuesday. So helpful.

Waving hi to Mara, Mel, Candy, Tanya, BevJen, SeeQ, Dutchiris, Runor, Lynne, Emac, and all the rest of this very special group.

candy-678

Liver ultrasound this Friday. I am tired of doctor appointments.

dutchiris- Sorry you are having it rough right now.

Tanya_Djamila

Kitty great news on your scans and upcoming vaccination.

Candy I'm in for ultra sound pocket duty for you Friday. I hope you can start your PT when you finish with the other tests.

Dutch Chris is there any alternative medication for bipolar in your state? These medications for bipolar are not one size fits all and so many struggle with the zombie and other side effects. some people on here made the retirement decisions after financial consultation, benefits, and of course disability. It may be too much to think about and decide at this time while you're healing. Sending hugs and peace.

Mel are you considering getting a puppy? I think about the quietness of your home and know you need pet noise. It's so comforting.

Booboo I'm in for pocket duty for you Tuesday for your surgery.

Take care all

Tanya

Tanya_Djamila

Mara I know you said you do surveys. Are you doing the citizens survey that they have listed on this website?

it's a survey about the impact of Covid on MBC patients. I think they pay $200 or you can donate to a charity.

Tanya

mara51506

I saw that survey but I do not qualify since I am in Canada but thank you for thinking of me Tanya.

Kittykat9876

Hi Mara, I signed up to a survey company but because of my income and not working I don't qualify for most, its a bit of a pain so I've pretty much given up. I made a whole $2 in a week...lol.

Candy, i get what you mean by being over all the tests and having to advocate for yourself with everything needing to be done. I was joking with the nurses at the hospital that I should set up a bed in the corridor I'm there so often. Tomorrow will be the 4th time this week. Lucky for me it's only a 10 min drive.

I'm sorry to hear about your daughter dutchiris, its so hard to deal with when you are well let alone when you are struggling with your own health, I wish you and your daughter all the very best and truly hope that a workable middle ground can be found with the help of her doctors.

Thanks everyone for the best wishes, I'm beyond pleased and I'm actually feeling a lot better, I'm going to take Finn for the weekend to give his poor mum a break. She works and is doing a uni degree while bringing Finn upon her own, knowing her she won't relax, she'll spend the whole time studying.

Wel, time to start the day, but first coffee. Have a good evening, afternoon everyone.

runor

Micmel - how did you keep a hound in the house without him tearing it to bits? Did he howl all the time? My brother had a pack of cougar hounds and those dogs Never. Shut. Up. It drove the neighbours mad. All day that endless baying. Let's hope DeeOhGee was a bit more laid back!

Kittykat - hope the jab is uneventful and you have no side effects. That would be nice!

Candy - good lord! You have  LOT going on! Let's hope someone has a well organized day calendar to keep it all straight. I don't know how people stay on top of schedules and changing things like that. I walk into a room and stop and stare around while muttering, now why did I come in here? I get easily overwhelmed trying to keep track of anything at all. Hope everything gets worked out smoothly and in a sensible way for you.

Dutchiris - if someone else came to you and told you exactly what you told us, if they said they were tired and overwhelmed and didn't know what to do, what would you say to them? What wisdom and compassion would you show them? Then show that same wisdom and compassion to yourself. Treat yourself as if you are someone that you love and value. Treat yourself as if you were a good friend. If you can figure out how you would counsel a friend who was feeling that way, then you will know how to guide yourself. We are as deserving of the  compassion and kindness we would show anyone else. I hear your tiredness and not knowing what to do next and I am sorry. Wrapping you in a gentle hug.

SeeQ

dutchiris, you have a full plate with your daughter's medical issues. You have another full plate with your own medical issues. It's no wonder you're feeling overwhelmed. Is there anyone else that can help you manage your daughter? If not, please follow runor's advice and allow yourself the grace you would show others. Wrapping you in a cyberhug.

Candy - between the worry, self advocating, and appointments, it is tiring. But, your self advocating is paying off and you are making forward progress.

Hope - in your pocket tomorrow

Mara - we need the snap potatoes to give balance to the heavy stuff. Please keep sharing.

Back from MO appt today. I'll start dose reduction on my next cycle. Since I appear to be very stable, we are stretching out routine appts, so PET/CT in late June, bloodwork and MO appt in early July.

mara51506

I will keep posting my stuff here. Not too much going on today, some laundry in my new wee machine which was only 100. I also bought a washing wand off amazon in the neighbourhood of 30 dollars. Plan to use the old washer as a bucket and see how it is cleaning clothes that way. Watching youtube, looks like you plunge about 50 times, leave it to soak and do it again. Should be fun, I do collect laundry supplies but may look into dedicated storage for everything of put extra shelves at the top of my linen closet which has tons of storage.

It is a nice day here, sun is coming out. Need to break down some Amazon boxes and get them out to the garbage area and proably will be walking. Thankfully I woke up at a more civilized our of 630 instead of 4 or 430. Not sure if I need to shop, may need to let older DB offer unless I am in an emergency. I did not take him up on his offer last week so I will this week. He likes to help out and I don't mind if he does help.

mara51506

Kittykat, I can understand the frustration with surveys. I usually only do them while watching TV and give them up if I keep getting booted out. If you need any site suggestions for other things to do, PM me. I have a few different things I do for money to subsidize my disability.

Micmel

Runor~Deoohgee bayed oh yea he did. But since we had him since a puppy he didn’t do it all the time. Only when he got excited. I miss that glorious noise. He was my buddy. I miss him so much I’m broken hearted, can’t shake it.

Tanya~ I can’t do the puppy thing. We just got new carpets, because the dogs were old enough. I also thought about a rescue, but Deeohgee is irreplaceable in my family’s heart. Just like tag is.

Mara ~ I don’t like a lonely house you’re right. It will effect me. Greatly. So I’m torn.

GoldensRBest

Mel -

I know the ache in your heart as we’ve lost 4 dogs. 2 lived to 15+, one was lost to a heart tumor b4 age 10, and another to a heart tumor after turning 10. Goldens are prone to cancer - yet we continue to want them in our life. We had to help all 4 cross the rainbow bridge. I prayed over all of them with such fervor that God would take them in their sleep but that was not to be. But I wanted to share something that I have saved and included in the scrapbooks of our dogs. It is so beautiful and makes me cry. Just like those damn commercials on tv for the ASPCA. What a racket that is - give your money to your local humane society that has a challenging budget with minimal admin costs. Sorry for the soap box. HUGS to you

Micmel

that’s beautiful Goldens. My tears. Ugh!

Sunshine99

Goldens, that was beautiful. I agree about the commercials for "charities". ASPCA, Wounded Warriors, St. Jude's, even. I hate that they say, "Send us some money, and we'll send you this beautiful blanket, tee-shirt, mug... or whatever". Save the money on making and sending me the item and spend it on the charity! Yes, they're very worthwhile charities, but I'd like to direct my funds to the people, not to some "thank you gift".

Along the lines of rescue, I was sitting in the airport years ago, and I overheard a man saying, "Even a 13 year old horse deserves to live out a happy life", or something like that. I thought that was so great. For us, I don't think we'll have another dog. All of our three Airedales were rescues and were a handful. I'd do it all over again, but with my health, I don't want to put that responsibility on my husband or to have a dog mourn my death (assuming I die first). Do I miss Jeeves, and Oliver and Theo? You bet. I have all of their collars hanging on hooks and we kept Jeeves' toys and his food bowls. The rest of his things we donated to our local Humane Society. They were so thankful.

One other side note: Did you know that you can donate old pillows, blankets, and mattress pads to the humane society? At least they took them pre-COVID. They can use them for bedding for the animals and since Good Will, etc., can't take them, it's nice to see them put to good use rather than going into the trash.

Mel, I hope the hole in your heart is gradually filled with memories that make you smile. I and we here feel your pain. It's gut wrenching.

(((hugs)))

Carol

mara51506

I have two options that will be available when it comes to being vaccinated. I registered with a pharmacy to get the AZ vaccine, will get an emal when it becomes available. I also made an appointment for noon on May 17th as well. If I get the AZ at the pharmacy, that would be preferable location wise, if it is first, I would of course cancel the may 17th vaccine appointment. I am just glad that there are options coming up and a goal in sight.

Elderberry

To All: just popping in from weeding to say "HAPPY EARTH DAY" Let us all protect our lovely and precious blue marble in space

candy-678

Well DAMNIT. My only local friend I know with MBC--- bone only, on Arimidex and Xgeva, stable for 8 years. She called tonight. Bone mets has spread per MRI--was having new pain that prompted the MRI. Getting a PET on Monday to see where else it may be. MO told her they would change treatment when she sees her May 4. My friend is not like us here--- does not research her options, does not read about MBC. I told her of a possible bone biopsy or liquid biopsy to check for mutations. I asked if she wanted me to go with her to MO appt. Her husband will go with her. But I fear they won't know the questions to ask. Whatever the MO says, she will do. She is such a sweet lady. Quiet. Does not want to make a fuss on how she is feeling. Down plays her pain and feelings. She does not deserves this.

illimae

candy, I’m sorry about your friend and that’s a tough spot to be in, you want to help them get the info but can’t push on people. After my experience with my BIL who had pancreatic cancer and passed in 2013, I realize now how much we didn’t know. He just nodded, so I asked lots of questions but this was before I got cancer myself, so I tried but was mostly clueless. I love when people ask me questions now, lack of knowledge can be deadly.

DH and I loaded a trailer to move more stuff to the cabin, a shower, sink and oven to be installed plus many boxes and bags, we’re both exhausted. A friend is going with him as I have my spine MRI on Monday. Happy to see the progress though.

Micmel

Candy ~I’m sorry to learn of your friend. She still has ibrance. Which is a good drug. I will keep her in my thoughts. Along with you, her good friend.

Mae~ always amazed at your energy. Jealous is more like it. You go girl.

I’m trying to calm myself more about my Deeohgee, it’s not working very well. I’m sad constantly. I am in desperate need of him back. Part of me wants another dog. But another wants to let it end with such a truly wonderful story of love and unconditional care. Ending with having the best two puppies ever could imagine. I love dogs so much. I could have. Another one but DH and I are considering some travel. It was a reason we couldn’t. I am not much fun anyway I told him. I. Feel sorry for him. He’s such a good man. He and deserves so much better. I hate that I can’t be who I was.

Micmel

cool pic elderberry. !

SeeQ

Goldens- I loved the dog's last will, thanks for sharing

mara51506

I love that too Goldens, can be applied to any furry or even non furry family member we lose. Beautiful sentiment. If I were to outlive my cats which is not for sure, depending on my health, I would likely get another cat.

I am also feeling very blessed to have helpful people in my life. One is my friend from work who offered to help me set up to get a shot when pharmacies get AZ due to a large network outage. The other was my nephew Jamie who told me about filing for the pharmacy shot when it is available. I also was notified of using a local health unit site to book an app't too. That will be May 17th assuming I don't get the AZ first. Another friend on FB who lives nearby who I know from my clicking for cash group offered to drive me if the appointment is far away. That was nice for her to do. I have not even asked DB or SIL for help, I already know they would do anything they could for me.

I did have a nice walk but part of the way in, decided to pick up a couple extra groceries. I realized I needed a bag and did not bring one since this was spur of the moment. No problem, went in, picked up a thermal lunch bag. That was fine but boy the cashier certainly spoke sharply. I did not get a cart and just put groceries in the bag I am using to get them home. If the bag belonged to me, I know I am not supposed to put it up on their counter, just the groceries but in this case, I also need to pay for the bag, so I put it up there. I told her that. She did not apologize but I was unwilling to press the issue. I don't think she meant to be rude or short and I would think all of our collective fuses are shorter than they used to be.

dutchiris

I have an appointment on 4/29 with MO. This waiting is terrible. In addition to limitations while recuperating from surgery, I now have no water today due to road work.