My Husband, My Life, My Love, My Family, My Cancer
Comments
-
Hello Ladies ~ feels like Saturday for some reason. Read an article about our stimulus checks. Which is a good thing. Watching Andy Griffith show. Which I wish was the way things were. It was peaceful and not full of entitlement and people knew how to Work a full honest day. I miss the old days. Before cancer. Before life got weird
0 -
Candy, I hope the treadmill aids you with some of the fatigue you are having. Not having the ability to simply go to a store to shop for something besides groceries is tough as that does add something to our lives, the hairdresser I can see being important too for social but also beauty.
For me, I have really not done too much, walked half an hour this morning, sitting around most of the day waiting for amazon to deliver my cat food and litter. Starting to think they won't deliver today and will have wasted my day. I started a book I read a long time ago by Stephen King and Peter Straub called the Talisman. It was originally my Mom's book, but I did read it as a kid. One of my favourite books and the first book I have attempted to read since my brain met dx in 2016.
0 -
Mara~Great book! I love all of his novels. Enjoy! Relax....
0 -
It's good on second reading. Funny how some of the parts come back to my memory. Wish they had made a movie about this book. Oh well, I can go back into the Territories in the novel and keep reading.
0 -
Good evening all
My two daughters are married to two brothers and their mother tested positive for covid19 yesterday. I spoke with her today we share 7 grandchildren. She works in a home for mentally ill and was infected by a coworker. 20 workers at her facility tested positive after one workers husband tested positive. Now thy have a very reduced staff and probably their clients are going to test positive too. She is worried that she has passed the virus on to her children and two grandchildren husband etc. she lives in NY. She had a fever for 3 days and was still expected to go to work as an essential worker, but she didn’t. She was refused service at the hospital and told to go to her PCP. PCP told her not to come to their office no tests. Finally she found a testing place. They gave her results in 5 minutes. Now she was sent home to quarantine from her family and they should isolate from everyone for 14 days. She told me she currently has body aches and fever. Her biggest fear is that she’s given it to someone else
May you all have a safe isolated healthy evening.
Tanya
0 -
Tanya,
What awful news. I can't believe they wanted her to work with such a vulnerable population when she had a fever in the middle of this pandemic! Prayers for her, your daughters, grandchildren and all those in that facility. I hope no one gets too sick from this. I know you must be worried about your family but I pray you will have peace of mind in the midst of this.
0 -
Tanya~😟 I hope that the infection did not reach all those people. This is quite enough of this crap My state has jumped up into the number five highest cases The northeast is getting hammered. I don’t even want to leave my house They closed a Wawa down the street because a covid workers was positive now they all have it This is just crazy shit Here. Everytime I feel a chill I’m freaked out I’ll be thinking of you and your family Tanya... hugs my sweet friend.
Mae~ thinking of you and hope you’re doing ok
Chicagoan ~ always nice to see you here Hope you’re doing well. You’re actually and OG to this thread, also been thinking about Lynnwood and Grannax. Been a while guys. Hope you’re all ok.
0 -
Karen,
You and I think alike. You are an optimist! I am doing everything I can to enjoy my days at home and am starting to look through recipe books to cook something yummy for Easter. I refuse to let this epidemic bring me down. We have to think positive. Sometimes it’s hard....easier to let your mind go to the dark places. But that’s why we need each other here—for support. Thanks for always bringing a positive spin on things.
Mel, I’m also a natural homebody. But yesterday I pushed myself and took a bike ride around my neighborhood. What a hoot that was. I haven’t been on a bike in over 20 years, and I looked ridiculous. I kept steering from side to side on the street until I got myself going. I can’t Believe I didn’t fall off. I was wearing a hat which almost blew off. What a sight...me bald as a cue ball riding a bike. I was determined to get my butt off of my comfy chair and start moving. I give all of you who exercise credit (Candy, Mara) for helping me to see the mental benefits of exercise.
Tanya, prayers for your family to stay safe.
Mae, thinking of you. Hope every day is a little better than the day before.
I need some help with support on Monday. I have my scan on Monday morning and am very nervous about results. My last 3 scans showed progress, so I’m so scared about this one.
Lastly, wishing all of you a nice Easter.
Love to all,
Laurie (Boo)
0 -
Reporting for pocket duty Monday for sure. ! Hugging you my friend. Another sunny day finally!
Love to all.
Dodgersgirl
Karen
Sondra
Rosie
Bevjen
Tanya
Minnie
Mara
Moomala
Candy
Chicagoan
Mae
Iwrite
Jensgotthis
0 -
Laurie do you mean that your last three scans showed progression? I'm still on Afinitor but my tumor markers went up this month so I am sure my scans will be moved up a few weeks to see if there's any progression. Ugh. MO will be so happy that she can put me on Piqray but I'm seriously scared of that drug.
How nice to get out for a bike ride! I miss bike riding so much. I have a beautiful cruiser but my ortho said that I am not allowed to ride it anymore becuase of the fall risk. Sad face.Tanya I think your family lives in a city about an hour from me. The cities are about the same size but their city has twice the number of cases we do. How upsetting that her employer wanted her to come to work while ill. We have some pretty harsh restrictions here so it's surprising. I'm so glad she didn't do that. I am thinking of how worried you must be. I hope your kids and grands will be ok.
I had a Zoom evening with a few of my friends. One of them works for the company that is producing the antibody testing for Mayo Clinic. The antibody test is going to be so helpful in telling us who needs to continue to stay home and who can go back to work. She said they will be rolling out the testing in Minnesota and Wisconsin first and then it will roll out to high illness cities like New Orleans. She didn't say anything about New York. Maybe there's more than one company developing this test since our Gov said yesterday that antibody tests will beginning rolling into NYC and surrounding areas very shortly. She had a few facts to share - mostly that the virus is expected to be around for awhile. My friends were talking about going to their summer homes in the Adirondacks and in the Finger Lakes and wondering if they should expect to be able to continue to have friends and family up to their summer places. She said not only NO to that one - that they shouldn't have anyone to their family homes this summer but that they should not be surprised if they are turned away from their summer homes. I know that the outer banks is not letting people in - even those who own vacation homes there. Residents only. And that has to be because of the minimal medical facilities in these places.
This friend is also a former OR nurse and offered her services to local hospitals since she will be furloughed from her job in a week. The hospitals turned her away and said she was not needed. I guess that is good news but we are not expected to reach peak here for another few weeks. We are about 350 miles from NYC and a few weeks behind them in number of cases.Candy I think Gabapentin is worth a try for you. I am finding it takes a few weeks to build up and work. It's not perfect but it is helping. I am still not up to therapeutic dose though. I hate taking another pill but my back pain was at the point that I had to do something.
0 -
Hello all.
Boo- In your pocket Monday for scans.
Tanya- Oh my. Thoughts to your daughters mother-in-law. Hopefully she will recover quickly and easily. Tanya- don't you have a scan coming soon?
mara- I do walk on the treadmill because I think it is good for me. But it doesn't really help the fatigue or the mental either. The fatigue hits suddenly. I will be going along fine and then BAM massive fatigue. I haven't really noticed any change in that since I have been walking more with staying at home. Also, the mental is still rough. Yesterday after I posted I walked for 30 minutes-- 8/10ths of a mile. Some slow, some faster, some jog. Trying to get frustrations out. Still felt/feel depression about this whole situation. So I walk because it is supposed to be good and also out of boredom. But cannot really feel any different.
Today is laundry, housecleaning--vacuum and dust, and the treadmill walk.
0 -
Boo, In your pocket Monday!
0 -
I am sorry it is not working to alleviate some of the fatigue etc Candy. Maybe do some outdoor walks too. They don't have to be long and no one said walking by yourself is wrong. It is easy to observe the distancing from others by moving off any sidewalk to the side of road. Maybe choose streets that don't have a lot of traffic. My neighbourhood is full of walkers, especially when sunny and beautiful. I just go around the block for short walks a few times a day. My energy is better that way. Fresh air is different than indoors and getting out can be helpful. Again, unless the US says you can't do physical activity on your own, outdoors would be my next step.
Mel, I am getting further into the Talisman book. Do remember parts of it, have a long way to go. Found an online library to borrow it from so I have it for 14 days. Planning on reading some more today. I just love it.
Boo, will be in your pocket on Monday..
0 -
Thanks so much Mel, Candy, and Rosie. I need my buddies on Monday!
Moomala, yes, unfortunately, the last several drugs either didn't work or stopped working. The last three scans have shown tumor growth or new ones. It really doesn't make sense that the anti-hormonal drugs don't work for me. I'm wondering if I'm one of those people who is no longer ER/PR+, HERS2-. I've read of others whose initial diagnosis has changed, so I am going to discuss this with my MO.
The good news is I think Abraxane has kicked some butt. I am not in the same amount of pain...it's much reduced. I am just afraid of staying on it while this virus nightmare is happening...
0 -
Well, finished my 3rd walk outside. Each walk has been up and down different streets. The sun is nice, it is way less cold than this morning. The walks are not long, just after meals but the sun makes me feel happy. I will have to walk in rain as well.
The funny thing is that I have dealth with some level of foot pain when I walked 11km a few weeks back, but now I am finding that my feet are more sore when I do not walk, versus walking. I am happy about that though.
Had a good lunch of black beans seasoned with garlic, onion and taco seasoning, put nacho shredded cheese on, heated for 90 seconds in the microwave to melt the cheese. Then added queso and tortilla chips on top. These lunches are nutritious BUT also require me to do all this walking. I enjoy talking to the people on the street from a safe distance. Makes me feel less isolated that way.
0 -
Mara,
You inspire me. I want to be you when I grow up! I wish I was a gym rat like my hubby. But unfortunately, Ihate every form of exercise except walking. Thanks for sharing how often you walk....pushes me to get out the door!
0 -
Thanks all for all the well wishes. I’ll keep you posted.
Booboo bike 🚲 riding I’m impressed. That’s something I wanted to do again but i was too afraid bravo! I’m in for pocket duty Monday.
Candy thanks for remembering I have a Pet scan on the 23rd. I wish we could all do something to lift us out of this double funk isolation.
Mel always good to watch you fluff the pillows on the couch and call out all our friends.
Tanya
0 -
Booboo, what a fun adventure to get out and ride that bike! Two words for you: Bicycle Helmet. Head/brain injuries can be serious. And you don't want to go the ER, do you? Right. So order one and keep on riding! When my kid rode horses the instructors emphasized the importance of helmets, and the rule in our family was, if you ever ride without a helmet your riding career is over.
0 -
Laurie, how did I miss that you went for a bike ride. Totally awesome, that would feel exhilarating. As far as my walking, I look on it as my happy drug. My antidepressant. If I do not do it, does not take long for the sad to come crowding in. Getting myself moving, makes me proud of myself. I don't have much talent in arts, crafts etc but being able to inspire myself to keep moving makes me feel better about everything.
Just watched the new pixar movie Onward on Disneyplus. It was quite enjoyable. If you have not seen it, I highly recommend it. Going to get a snack and go back out for a few minutes. Take out some garbage too.
0 -
Hello everyone. Popping my head into the living room to say hi. All this talk of bikes makes me want to wheel Hub's WR250 out of the shed and see if I can kick it over and then crash it into a tree.(It has throttle issues) Have been spending a lot of time outside cleaning up from the mess of winter. raking, picking up branches, lighting stuff on fire. My inner pyromaniac is getting a workout. I have very limited garden space and one of my raised beds is rotten and root bound so I have to get the soil out to rebuild the bed. But the soil is one solid mat of tangled roots. I have done this before but it's a massive chore and I find I do not have the stamina or strength I used to. Plus when I do too much hacking and chopping it flares my lymphedema.
I ride along in all the pockets where good wishes and willing spirits are needed. I wonder what kind of world we'll emerge into when this is over. It has brought out the best in some people but the very worst in many others. Waving bye as I duck out the door!0 -
Shetland,
Yes ma’am! Seriously, hubby and I are going to order one from Walmart for each of us. Very, very good idea! I think he wanted to wait to see if I’d ever take the bike out of the garage. Surprise! Wasn’t pretty, but I got around the block a few times.
0 -
Hi all, I’m here but feeling a bit down. I’ve barely been out since late January due to all the post Craniotomy issues, so I think that, being hungry and forcing myself to eat things that taste meh is really getting to me. I’m still optimistic that I’ll get back to normal but waiting is taking a toll.
Nothing else to report, all trips and concerts are obviously cancelled, so.... ugh.
0 -
Mae, I so wish your appetite could at least return soon and you could enjoy food again.
My own concert I asked to be refunded. It was rescheduled from May of this year to March of next year. Not interested in planning that far ahead when I do not know for sure where I will be. Too bad, but that is how the ball bounces.
0 -
Mae~I am sending you all my positive energy. I want things back to your normal Again. I know you never give up and I am sending you a lot of love...
0 -
Sending virtual hugs to you All. These are tough times on top of tough times. Hang in there.
0 -
Happy Easter to those that celebrate.
Bike riding-- Wow haven't done that since I was a kid--12-14 years old. Wouldn't want to try it now. Hahaha.
Mae- Hi. Giving you a virtual hug.
This morning I am going to watch a couple of church services on the TV, and my church is doing a message where we can call in by phone or get on Facebook. So I will do that.
Tonight I saw a TV movie advertised that sounds good, so I am planning on watching that.
Supposed to be rainy with thunderstorms today. So inside with TV on. Doesn't sound too bad, right? I am ok with the plan today. Just wish with the new week tomorrow could go do some "normal" things. Looking forward to that day again.
0 -
Candy, I am also taking it easy today. I borrowed a couple of books online at archive.org. Reading the Talisman by Stephen King and just plowing through it. I also borrowed Black House which is the sequel. I also took out the Tommyknockers, again Stephen King.
I have not read any books since my whole brain radiation due to initially not being able to follow the story. It was the same for audiobooks. That lasted a long time but seems to have vanished. I am very happy about this. I will simply read books online and enjoy the stories. Other than reading and laundry, not doing anything. Not feeling exercise, think this will be a rest day.
Happy Easter to those who observe it.
0 -
Illimae, I've been reading your posts from another thread. I'm so sorry you're down. Being down and under the "stay-at-home" recommendation or order is really tough. My husband took me on a long walk last evening - the same route he's been taking our dog. I wore my mask and we just wandered up and down the streets in our neighborhood. It was so good to get out! It's been raining here (not so usual for San Diego) so I haven't been getting my 10K steps in, but I did yesterday.
Stage IV is a strange place to be. I just arrived there last month. I don't feel different, except for the pain in my back and hips - I'm telling myself it's arthritis. I'm too young for that! I'm only 61. I can't believe I just wrote that. I'm too young to be 61!
Since my local Starbucks is closed, I bought myself a Nespresso machine and am loving it. Starbucks may have lost a customer... It was however, part of my morning routine before this virus shut everything down. I would walk the dog, then walk down to get my half-caf coffee. Here's a funny thing that happened that you may appreciate: When Social Distancing was first introduced and Starbucks was still open (only for take out), I had walked down there for my usual coffee. I was talking to Julie behind the counter, and a man that I knew (what I call a "Starbucks friend") came up to me to say hello. He started to give me a hug, and Julie sort of raises her voice and says, "NO TOUCHING!" He jumped back and we both laughed. I actually appreciated it, because I was trying to keep my distance from other people. I ended up elbow bumping him (and thanking Julie for looking out for me). This was before I had the mets diagnosis and I wasn't wearing a mask, but I thought I was pretty funny.
0 -
Mae - just want to say i heard you. It's a shitty time. Waiting sucks & hanging on to hope & optimism is work. xoxo
0 -
Thank you everyone, I appreciate it.
0
