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

Tanya_Djamila

Mara I hope you get more help from an affordable housing program or maybe even a cancer society. Steps are difficult for me to navigate too especially with packages. I think that’s challenging for everyone, a backpack and groceries!

Moth I’m happy you started your treatment again and the steroids are working 😃

Thank you everyone for your kind thoughts. It’s always a scanxiety situation over here. Just keep hoping for the best and fearing the worst type of thing.

KBL I’m glad you got the test you needed. Believe me the info you guys share on here has me questioning my doctors all the time. I’m available for pocket duty on Monday.

All those waiting on the nor’easter stay safe and warm.

Tany

mara51506

Thanks Tanya. I did have a big garbage bag to take out today and the back steps are icy. I was wearing cleats but the bag was a challenge. I did fine getting it there and back no problem. I do believe that I could adjjust myself that if I get a lot of stuff a nd it is heavy, I may want to consider doing an UBER home. Walking there really is no problem. Either that or take more trips for the exercise. I am going to get the info sent to me to apply for it and again, if I am still here when I turn 55 which is less than 5 years now, I would have access to places for older people which would be nice.

I also found some exercises I can do to strengthen the muscles in my legs so that if I fall, I have the strength to get myself up without anything to hold on to. I have been using the walking poles around the neighbourhood that Chicagoan gave me for extra balance and they work very well. Plan to practice getting up using those as well. Cleats make me confident even on ice. No slipping. Going to focus on strengthening my muscles so I don't have to call for someone to help me up.

KBL

Thank you, Tanya.

Mara, sorry your meeting was mostly a fail. I’m glad you were able to get the forms.

I got a call from my daughter today. She had gotten off work early and wanted to know if I wanted to grab lunch. I had had breakfast late this morning because I was just looking at my phone and wasn’t hungry earlier. You better believe I was willing to force food down to go to lunch with her. Lol. I was able to eat a little under a half a burger and a salad. I told her she put a pep in my step. We don’t get to be alone often. It was so awesome.

LivingIVlife

Mara- The call with the social worker really wasn't what you needed to hear. At least you can get the forms filled in and get your name on the waiting list for housing. What about a little cart you can buy to put your bags in. They aren't big but they have wheels and you could get it up to your apartment much easier. I see alot of people pulling these small carts. They are so handy.

Waiting for the nor eas' to hit us tomorrow! It's the third weekend in a row we have had a snow storm . Just filled the tub with water in case we lose power again.

Also waiting for results from my CT scan on Tuesday. Won't see the MO until Wednesday Waiting waiting it seems like that's all we do.

Rosie24

Tanya, congrats on stable!! Enjoy the feeling 😊

KBL

LivingIVLife, stay safe in the storm. My brother will also be hit. He is 70, so getting rid of the snow isn’t what it used to be.

Hoping you hear good news on your scan.

Micmel

Mara~sorry you didn’t find the call helpful. The ice sounds dangerous. Please be careful

KBL ~ I saw my dd today as well and it always makes me happy. She’s so lovely and sweet. Our kids our little miracles.
I got my hair done today and I love it. So it was a pretty good day. I don’t like the weekends though. Too much time idle. At least during the week I usually have an errand or two. Saturday’s and Sundays are so slow. Turtle slow. So my nails and hair are done. Expensive few days. But I don’t get my hair done a lot. I got peach color and black snowflakes. It pops

I hope you all are doing okay. Living waiting with you. hello Rosie.

mara51506

LivingIVLife and anyone getting hit by this Noreaster, be careful and stay safe. We don't tend to get storms like that terribly often here. Last major snowstorm I remember was the blizzard of 77. People died because they got stuck in their cars and then buried over with snow from the plows not seeing them. At the time, I was in grade 1 and in that day, the bigger kids took the little kids home which was not too far to go. Older brother took me and a couple others. Our 8th floor hallway window blew in and snow actually came through our apartment window a little even though windows were closed.

Living, I used to have one of those carts but found that it was hard to drag behind me so I gave it to my niece. I do have a walker to use that could fill the bill too but I think that I live close enough to stores, should do as people in cities do and buy a little at a time, have big stuff delivered. Get all the cat food and litter through Amazon or online at Walmart through instacart.

LivingIVlife

Mel- love the nails again! I also got my hair cut yesterday and it feels so good. Since I started the Ibrance my hair has become more curly and tends to have a mind of its own. Did your hair become more curly?

Mara - well at least you tried the cart. I'm sure you have figured out what works best for you. Especially if you live in an area where you can get things delivered. There was a program on TV where people investigators compared pricing to ordering on instacart and shopping in store. There were absorbent price hikes on instacart grocery items and added fees . The difference was quite staggering.

KBL

Love the nails, Mel. I’m so glad you got to see your daughter too

Micmel

living. In the beginning yes crazy hair. Then it calmed down a bit. Now it's straight. Bone straight!!!!

Rosie24

Living, How are you doing with the weather blast?

Mel, pretty nails!

I had a short notice bone scan yesterday, like can you be there in 2 hours. I’m still down with pretty bad hip and leg pain and went back to primary doc on Thursday. She changed a couple meds and said we needed to know if it could be bone mets with my MBC dx. She talked to MO and it moved fast. It was a long day with almost an hour drive each way (bigger facility so that’s where they could fit me in) and 3 hours to kill between injection and scan. No evidence of osseous lesions, so that’s good. I feel like it’s something pulled at the top of my leg but then it sometimes hurts at the side of my hip. Sitting in the car makes it miserable. No plans today so lounging on the couch and taking things easy. Monday is MO appt to square away my next treatment. I’m nervous about what I’ve read about them (Xeloda or Taxol) but trying to stay hopeful. Time to get back on something though.

LivingIVlife

Rosie- yes we are having nor'easter with snow,wind and maybe ice pellets. Just another lazy day of reading and lounging. You mentioned your bone scan. I'm happy no lesions shown. I hate the part when you have to wait three hours before the scan. We also do not live close to the hospital.

booboo1

Rosie,

I hate to hear that you are in pain. (I hate to hear of any of us in pain.). What kind of pain meds do you have? Do they work? I’m finding that only some of the opioid meds work…none of them completely takes away all of it. I am finding that ibuprofen is working better for my current arm pain, but it’s all a game of try this, try that and hope you’ve hit on the right combo.

Anyhoo, I have been on both Xeloda and Taxol and had no major side effects from either one. Xeloda did not work for me at all, and Taxol is particularly hard on the heart, so Taxol is something I would have tried again, but my MO (at the time) did not want me to. So I’m hoping you get good results from whatever they prescribe.

Hugs,

Boo

illimae

Rosie, I’ve been on Xeloda since September 2020 and after the 1st month, getting SE’s balanced, I’ve had nearly zero issues. IV chemo was much more difficult with appetite problems and nail infections. Everyone is different, so you never know but I wish you excellent luck with whatever comes next.

Rosie24

Mae, I thinkMO is leaning toward Xeloda. That’s good to hear it’s not been difficult for you after the first month. I hope I follow in your footsteps!

Boo, I started with Advil on my own a few times a couple times a day. It helped for a few weeks then not so much. PCP believes I’ve pulled or impinged something in the hip area that’s causing a pain flare. She prescribed Sulindac (clinopril) for a stronger anti-inflammatory, not much help for pain, then yesterday she switched to Celebrex with 1-2 extra Tylenol at the same time, and encouraged me to use the Vicodin from the first time. I told her I was afraid of it. Well, on Thursday I took one after my appointment and I felt like I was in heaven for 3 hours and almost there the rest of the night. But yesterday for my bone scan I took one and it didn’t help much. Same for today. Not much pain relief but a I felt a bit more mellow. I’m afraid (still) to take more than one, maybe I should. Thanks for any advice you might have, Boo, or anyone here. DH said he never found Vicodin very helpful. I feel like I’m taking more and more pills and hope my stomach and liver can handle them. Sure would be nice to know what the problem actually is too.

illimae

Rosie, I think a rough start is common with X but as others will likely add, once you get over the hump, you’ll probably feel surprisingly good.

runnergirl26

Michel, I understand your feelings of loss and grief and the fear that you will be replaced. My story starts with enduring a horrible marriage for twenty three years. When my youngest turned eighteen I got the courage to leave. That was the best decision of my life. I can't imagine going through cancer treatments while still married to a narcissist. I met my now significant other shortly after when I went to a wine bar to meet a friend who ended up not being able to make it as she had to cover for someone else at her job who didn't show up to work. Long story short, my SO was there to go to a meetup group for single people. The leader of the meetup group saw me sitting alone and asked if I would like to join. I sat next to him and we hit it off instantly. Nine months into dating I was diagnosed with Cancer. I told him he owed me nothing and didn't need to stick around. To which he replied “I love you and what kind of a man would I be to just walk away." He has been by my side through all my chemo, radiation, and an infected port, surgery for implants and tubes and ovary removal. I have suffered with neuropathy, and lymphedema terribly. Right now my lymphedema is so flared up and my depression and anxiety are terrible. (I just picked up antidepressant today) so I am hoping for some relief. He never wavers and this past month since my lymphedema is so flared up he just quietly does the majority of the cooking laundry and grocery shopping. I too think about dying and him finding another woman. I hate the thought of another woman being in “our" house. We had it built and picked out everything together. I asked him that if he meets someone else to please sell the house. I know this may sound funny but I would not want my grown kids to see another woman in my house. If I die before him I do hope my kids will stay in touch with him. He says I am his soul mate and that he would never want anyone else. But I know that life goes on and it is not fare to expect someone to live alone for the rest of their lives. I think men especially have a hard time with that.

Micmel

runner~my heart is aching reading that. My DH cooks and cleans and does all those things as well and has said those same loving words. It's like air to our lungs to hear that reassuring love we so desperately need. I want to give you a huge hug because you're not alone in your feelings. Welcome to the thread. The support I find helpful. Lovely beautiful strong women here. Friends.

runnergirl26

Michel Thank you for you me kind words. Your post resonated with me. I feel right now I’m in a big black hole and I am struggling to crawl out. Living in pain is so fatiguing. I can hardly manage to work and then just to come home and be too exhausted to do anything. I feel like the world is spinning but I’m not on it….

Micmel

I understand the feeling of no control . Cancer has ruined my body my life and I understand the fatigue and stress and sadness. I hope that you will keep visiting the thread and maybe we can help each other as we're forced to go through this shit stew. Sweet woman

candy-678

Pocket duty list for week of Jan 31--

Rosie- MO Monday for next treatment decisions

Tanya- MRI results Monday

KBL- CT Monday

Emac- CT Wednesday

LivingIVLife- MO Wednesday for CT results

KBL

Thank you, Candy. I was checking in on my brother with the snow, asking if he lost power. He said no. Then this morning, at 3:30, my battery backup started beeping. I lost power, and it’s not supposed to be back on until around 11. It’s 37 outside in Florida. It’s around 1,000 of us, so at least it’s not a huge number of people. I can’t imagine why it’s going to take them so long

GoldensRBest

Mel/Runner - it is such a blessing to have supportive spouses/partners. It breaks my heart when I see others, especially with young children, who end up having to navigate this path without someone to lean on.

Here for pocket duty for those on Candy’s list. I’ve got some of those old fashioned conversation hearts valentine’s candy.

LivingIVlife

Got through the storm without losing power! It is still windy outside and cold. Hubby and neighbor going out after lunch to dig out.

KBL- hard to believe it's 37 degrees in Florida. I hope you get your power on very soon.

We finally get to have our son out tomorrow after 3 weeks of restrictions. I can't wait to see him!

Candy - thank you for pocket duty for scan results on Wednesday. Wishing everyone for excellent results this week and Rosie for a treatment decision that will be an effective lasting treatment on this journey .

mara51506

Living, so glad you get to see your son very soon at that restrictions are lifting there. Some of our restrictions are being lifted as well.

I have to say I so angry right now at a small pocket of protesters in Ottawa. There are thousands of people protesting mask mandates, mandatory vaccinations for certain jobs etc. I am not angry that they want to protest, as long as it is peaceful, it is a right to assemble. What really burns me is that a hero of cancer, Terry Fox who did the Marathon of hope and raised so much money was defaced to put messages on him. He was a hero who went as far as he could across Canada while without most of a leg and being sick himself. Keep our monuments out of the protest and assemble peacefully.

runor

KBL  - fingers crossed for good CT results and hooray for daughters.  

TANYA - Good news for stable !  It always makes me smile when I hear that for someone. 

ROSIE  -  I hope you find that combo of things that works for pain really soon.

MARA -  you were on my mind last night as I did an experiment. I bought a new pair of all weather muck boots and happily popped them on to go out and do chicken chores. I have to carry food and water down a long slope. An ice covered slope. And those new boots .... death! They must have been covered with some kind of wax or oil to protect them during shipping, but they were slick as hell! I almost killed myself. I did my usual hockey tape trick, wrapping hockey tape across the sole then up and around the top a few wraps. But whatever coating was on the boots prevented the tape from sticking. It just slid off.  I scrubbed the soles of the boots with dish soap (no help), Comet (no help) and then some of Hub's mechanic hand degreaser. That helped a little. But not enough.

I found a spray can of Gorilla Glue flexible spray rubber stuff (that is not the official name of it). I sprayed the soles with this black goo and while the goo was wet, set the boot in sand. I keep bagged sand for ice moments.  Then I left them over night to dry. This morning, unworn, it seems I have boots with a permanent layer of sand stuck to the bottom. This morning will be the test. But that black Gorilla stuff, I swear it's asphalt in a can. I got it all over my hands and that smell...I knew it.... fresh pavement! Had to use paint thinner to get it off  , and then I wonder why my skin is so dry and irritated.

Hi to all, riding along for anyone who wants company. 

runnergirl26

Yes I will. Right now I feel like I need extra support and unless someone has gone through Cancer and treatments it is really hard for them to understand.

KBL

Pocket duty for all who need it.

LivingIVLife, coldest day this year. And I’m in central Florida. It was even colder in northern Florida, about 27. Have a great time with your son.

My power came back on after 6.5 hours. At least I got my coffee.

Runor, thank you. That does not sound like fun to me what you had to do so you didn’t break your neck. You come up with good ideas, though. I hope the sand helped.

Mara, I’m sorry they did that. I agree, peaceful protests and leave the property and statues out of it.

Runnergirl26, I’m sorry you have to be here, but we are here to support you.

LivingIVlife

Runnergirl26- Yes we are all here beside you!