My Husband, My Life, My Love, My Family, My Cancer
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Morning all.
I can hear the tension in your posts. I too am going crazy. The President of the U.S. expanded the social distancing guidelines to April 30 (as Mel mentioned in her post). My Governor of Illinois has a stay-at-home order till April 8 which I am sure will now extend to April 30 also. I agree with the guidelines as we need to slow this virus. But...… Oh My I Am Going Crazy. Another Month.
I looked at my April calendar-- the volunteer committee meetings to be cancelled. I had a yearly eye doc appt- exam and new frames. Not happening. My hair needs cut. Luckily I don't color my hair, but the layers are too long and it looks horrid now, much less another month of growth. No church services for the month of April. On-line shopping versus going to the store for groceries still. All of it. It is hard to just stop everything for all this time. And when the restrictions are lifted that doesn't mean WE are safe to go out. The germs are still out there and we could be infected. WHEN WILL THIS END.
I was going to use some income tax refund to shop for some new clothes--shoes, shirts, etc. Since I cannot go to stores to shop I wondered about on-line clothes shopping. Would that be wrong??? Using the UPS/FedEx staff to deliver my non-essentials. How about germs on the packages??
About the DNR conversation--- I want to be a Full Code for now. I am 2.5 years into the MBC but I am on first line treatment and stable. I know MBC is eventually terminal, but I am not there yet mentally or physically. If I get the COVID, I want a chance to recover. If I get in a car accident, I want the chance to recover. I still want to fight.
Moomala- I cannot give advise about the rads as I have not had rads myself. As Sondra said, can they do less treatments--prevent some of the diarrhea and not have to go to the center so much? I am sorry you are dealing with this.
Mel- Sorry you have to deal with the tension in your home. I live alone, so none of that. But no one to talk to either.
I thank God for this group, for Mel's Living Room where it is safe to go and vent. No COVID-19 here. Just love.
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Dear Mel,
Hang in there. This is tough stuff. I've been thinking lately of starting a journal. Since this virus outbreak is unprecedented, I was thinking it might help me to record my feelings and future family members to hear about it 50-100 years from now. Just a thought.
I am going to bake something today for my oncology team. My infusions are on Tuesdays, so every Tuesday I bring them something sweet (sugar rush to keep them going). We all call it “sugar Tuesday", and I know they love it. I come in the door and shout “what day is it?” They all shout back “sugar Tuesday". It's really fun in an otherwise sad place to be.
Hope you all stay well, my friends.
Laurie
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Candy~ I love our living room also. Safe and warm. I wish we could all support each other for real. Daily. This place does help to know I'm not alone in this shit stew.
BooBoo~ I think that is adorable. Nurses always appreciate things like that I think they are the hidden angels a lot of times. I always try to be nice to my nurse. I mean why wouldn't you be? They would have to be a real asshole to be in the infusion center and be a dick. You're right in an other wise sad place. I used to walk in and say “ I'm back like the plague." I don't think I'll be saying that EVER again. No way. I may even get bitch slapped. Lol.
The tension has subsided, but damn. Sometimes, living together is hard. Sometimes people everyone needs a little space. I still Can't believe that this is happening. I was watching law and order last night and they were showing shots of NYC I mean it's massive. No wonder they have so many sick. Streets and streets of apts, lofts, studio apts, hotels, shops, stores I mean dense population dense as dense could Maybe even get. That is why I'm Really afraid when I sit and think about it, will this ever really leave now!? It's everywhere in the world Everywhere. Except Antarctica. Just proof that it can't live without a host. But Ive had enough isolation.
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I’ve been hearing a lot of people talk lately about an app called Zoom. Anyone use it? I was thinking it would be so cool to use something like that to get together in Mel’s living room. I’d love to put faces to the names of all of you. We could take a day of the week (time may be an issue for some depending on the country where you live) and chat together. Vent too! Sometimes you just have to vent
Anyone use it?
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Mel, I hear you on that about the length of time of the social distancing. It is a very long time not to be able to go out if you want or see everybody like you want to.
I do see my DB and SIL but from a distance and I do not hug, kiss or touch them. When we went shopping, I wore a mask SIL made as protection for them, not me. I also do not see nephews or niece either and that is different.
Still trying to stay busy, I did go shopping at my closest grocery store during the hour opening for seniors, mobility issues and immune compromised. I decided that even though I am not on a harsh drug, I am on cardiotoxic drugs and have had cancer for 5 years. No way that I would not be more at risk. The lady watching the door did not ask for proof, let me right in. I did offer to show her my app't card which clearly states chemo appointments in case they needed it but she said no. It was much quieter and much more space between people. I will continue to go at that time. I also don't dilly dally in there, I go in and out as quick as possible to help the people at the store and to keep the store as empty as possible.
Only other thing I am doing to day is walking around the neighbourhood a few times with my star wars music. Maybe after meals, between laundry and vacuuming chores. I always feel better afterward. I also may get more snack size burgers from Harvey's. I usually just put garlic mayo and onions on them so they can reheat easy. I also have discovered that if I put a little cooked spinach, queso and a timy amount tortilla chips on, they are delicious. They are inexpensive so I usually pick up 4 or 5 all for about 10.00, so hardly a huge dent in my budget.
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Moomala,
I wanted to say I don’t blame you a bit for wanting to delay radiation. I did several months ago when I was so sick. I flat out told them NO....I still haven’t had it, and I’m doing just fine.
My family has told me I have to take charge of my illness, and I think that’s what they mean. These doctors don’t realize the cumulative effects of what these treatments do to us. I always like to keep in mind that they (doctors) work for you. They provide a service, and you get to say NO when it isn’t right for you.
My last radiation treatments caused a lot of D, and that is very unusual for me. So with all you’ve been through, I think you are being wise to say NO, not right now.
Take care!
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Laurie, I totally agree with you about the doctors being there to offer treatments and advice but we decide what we will and will not do. I cancelled two appointments because the first was just about the fainting possible couple of seizures back in february and talking about being on different meds which I will not change due to known SE. The other was a routine echo which I felt was unnessary until we get out of quarantine. I have frustrated doctors, but we live with the decisions we make. They are welcome to let us know risks, and we should hear them out BUT if we still say no, they should not act frustrated or annoyed or keep trying to persuade us.
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My son sent me a link to Zoom when I told him I missed seeing the grandchildren. It is easy to use and we were able to see (use camera in laptop) and talk to one another without fear of germs. I know you can do groups as well and from what I understand Zoom will offer instructions as to how to do this. I am not a techie. SInce you can see one another, remember that a bad hair day is visible to all. LOL.
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Just to note - I read somewhere that you can make a 70/30 rubbing alcohol/water solution and put it in a spray bottle to spray down groceries. Leave solution to evaporate. Less mess than soap and water!
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Betrayal- I am just now dealing with techie issues. I had appt with MO tomorrow. They wanted to do telehealth call instead of coming to office. I have PC but not a microphone or camera. So.. we are doing old fashioned phone call for the office visit. I really need to get in the 21st century. Hahaha.
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Well, I have found a replacement for my Walmart chocolate as I don't want to be on public transit. Ordered a ridiculous amount of milk chocolate bars from amazon that are actually scheduled tomorrow for delivery. The price is a bit higher BUT since Instacart is backed up and cannot give a delivery date, I decided to bite the bullet and order from Amazon. Once the pandemic slows down and things open again, even if it is months away, I will go back to Walmart for things.
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my DH has learned MD has a travel ban in place. Looks like he will be here until April 30 earliest. Never ever heard of anything like that in my 49.5 years. This is just reaching epidemic proportions. Goodness me. Almost 200k cases. Like freezer trucks outside hospitals for over flow Of bodies, that’s nuts. We have slipped into that same world we were in when we got diagnosed. I’ll be damned if I have fought MBC for four years to be taken down by this epidemic! Wtf!??
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Nightmare for us all... I’m going to check out Zoom....I use FB messenger video and Microsoft Teams VC to speak with friends and family. It makes a HUGE different to see someone’s face. Those of us who have already been in total lockdown for 2 weeks and facing months more could use all the help we can get... moderators??
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Mel, I can sympathize with the anxiety over Covid for sure.
For myself, I am choosing to deal day by day in my own bubble. Following rules set out by the government. Washing hands, physical distancing, only going to get needed items. Having as much as I can delivered, though that is not really possible. I have TP on order from Amazon, just to see how long it takes to actually get here.
If I just deal with my own situation day by day, which I eventually learned to do with MBC, I feel much less anxiety. My worrying about it will not change whether I get it, if a family member gets it etc. If I let myself get too anxious, I will turn into a puddle on the floor and no one will look after me. I am going for many outdoor walks on my own, shopping early hours with fewer people when I need things and just doing things I enjoy. I only listen to updates if rules change in my province. Not hearing the numbers in Canada because it does no good for me to know. Counting my own blessings that even in this situation, I have a roof over my head, am on disability and therefore my income has not suffered. I have been lucky.
To me, covid is like that sword of damocles that hangs over our heads with MBC when it comes to progression etc. It is there all the time, but putting that fact on the back burner and trying to live life in these weird times is what I strive for. Small things like trying new food combos, making money on my penny earning computer sites, watching video game walkthroughs and all my Star Wars on youtube. These help me keep my mind off the two swords of Damocles over my head all the time. They are there all the time, just not at the forefront.
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My oncologist appointment last Tuesday was held using Zoom. The doctor's office sent a link to download the software. (Not sure how complicated it was to set up the account and all that.) I used my Mac laptop and found that I couldn't use Safari. I used Firefox instead & had to figure out how to get the microphone to work. The appointment went smoothly and we could see & hear each other very well. I did clear off the bookcase behind before I went on camera! We'll use Zoom for the next appointment, too.
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Mel - I can usually tell when a meltdown is imminent and therefore am able to provide an early warning service to other occupiers of the house to take evasive action / shelter. Sometimes it just needs to come out in order for us to cope/move forward! (my cat has also had a similar look on his face when Ive lost it though!)
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Lily~Welcome to my second home. I agree Zoom is gaining traction everywhere. My DHs schools system is using it as well and it does seem pretty clear. I see you only have five posts. So welcome to the boards. But I’m sorry for the reason you’re here. I hope to see you become a part of our online family. Hope it was a good MO appointment!
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Morning all!
We should all be buying stock in ZOOM! It is the new facebook!
How is everyone feeling today?
I was talking to a buddy of mine and she said the funniest thing...she said, "I was made for a pandemic." LOL! Cracked me up! But I get it. I kinda feel like all this MBC stuff that I have been through over the past three years (we are in the midst of my 3 year cancerversary since my de novo diagnosis!) has me actually oddly comfortable with the social isolating and being a hermit.
I am sure I will freak out at some point.
My BFF and I want to meet at a trailhead somewhere in the forest to take a hike together...but the issue is that she has been around some people who have been around people etc...and we just don't want to take the risk. She said she would cry her eyes out if she transmitted the virus to me.
Another dear friend of mine, who is a PT and still seeing patients, asked me yesterday if we can meet up and be distanced but take a walk and hang out. And I told her no
I feel kinda weird, like I should be less strict, because she posed some points that nothing will happen if we stay a few feet apart and she doesn't cough or sneeze on me. But I just don't want to take the risk. She understands but I know this is dang hard. I am usually quite a socially extroverted person.
MBC has made me more of a recluse and has forced me to turn it down quite a bit and take so much more time for myself to rest and recover from energy expenditures, especially through the work I do.
Anyway - I am doing well and hanging in there. Had my first Zometa (after insurance stopped approving the Xgeva I have been on for the past three years - so WEIRD!!). The infusion went fine. I have a pretty sore bruised vein on my arm which I am nursing with massages and arnica and some heat. But I did not really experience any major side effects thank goodness!
Love and waving to everyone!!! HUGS!
Philly
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Philly~ Hi honey! I feel the same way. Like I was made for battle and fight! I am also used to being alone. I just don't like everything being shut down. Feels weird. My daughter and I are are so much missing each other It makes me sad. Today she said she would drive past the house and wave. I miss her and her sweet laughter. I don't like not having my sweet DD hugs. It's the small things we miss! Glad the Zometa went well.
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Morning all.
So maybe buying clothes online ok?? See my post from yesterday. And I see Mara bought chocolate online.
Today I do the phone call with MO for my office visit. I am going to buy a webcam as soon as one comes available-- out of stock for now. I think that the virtual visits will be the new thing, even after virus issues.
Going to try online Walmart order today also. Last groceries 10 days ago and getting low on stuff.
Philly- Glad the Zometa infusion went well. My insurance is still ok with Xgeva, so far.
Hi to Mel, Karen, mae, lily, Sondra.
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Thanks for the welcome - - I read everyone's posts every day and find great comfort here.
The results from my brain MRI were OK but they couldn't do the contrast part because my kidney function numbers were low. MO says due to Verzenio causing low GFR numbers but not really not low function. (I have to do more research on this.) My scans showed my tumors are still shrinking so that was good news. The surgery scheduled for removing the big floaters (actually a network of floaters) was cancelled so my vision is still a little blurry in my right eye.
Take care everyone!
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Candy~I agree, zoom will be the new thing for companies and office visits. It should be if it's a routine check up. I think it's a Wave of the future.
Just wish we knew more of what that future would look like. Think about it, China has more people and density than we do, and all of a sudden they just don't have anymore cases. Like over night ? Just seems odd to me. It's like they stopped Reporting. The doctor that discovered this virus can not be found and the other doctor involved has died. The story I saw said that the crematoriums are working triple time over there, and they aren't reporting accurately anymore. It makes no sense otherwise. It just doesn't stop. I just think they are under reporting what's really going on with the cases. This world is really going bonkers. Then in Iran. Hundreds of people drank this methanol concoction because some doctor out there. Said it was a virus antidote. Well it wasn't and they all died. Hundreds of people. Bam! Craziness. I don't think we can trust anyone except Canada and the UK and some other European countries. But the communist countries are just that!
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Lily~I know all surgeries are being cancelled. I’m sorry that your eye is bothering you. But glad your results showed shrinkage. Those are keys words to hear. Shrinkage!! I’m happy to hear you read with us everyday. Makes me happy to know people do read and find any help at all or comfort. I find when we share our feelings and emotions here, then they follow us less throughout the days. Leave it here and go live. Everyday! Sending you hugs!
Hello to Sondra Karen, Minnie, Mae, Mara! Philly. Runor, bevjen, jensgotthis,Iwrite MJH,
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Hi to all,
Before you jump on the zoom bandwagon, there was a news report this morning that hackers are trying to hack into zoom accounts even with online learning. Not good. So I think we need a lot more study on what is the best way to do online things and how to protect the info in our personal computers from being hacked. Isn't it horrible that there are so many awful people who try to take advantage even in these kinds of times????
I have been teaching online, but my university is uber focused on security, so we are all using the same platform (Blackboard Collaborate Ultra) and it's got a lot of security redundancies. So hopefully we won't get hacked while we are teaching classes! Thankfully, my semester is almost over, and I'm retiring at the end of the semester (was planned for about 9 months now, ever since I found out about mets to my liver.)
Hope everyone is doing okay, even tough we're all cooped up. I'm trying to take at least one long walk per day, and it's definitely helping. On the days when I don't do that, I am really in a foul mood. Trying to keep the mental health intact while protecting the physical health...
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BevJen~Nothing surprises me anymore honestly. I don't want my medical information just for anyone to see and personal information. I'm still gobb smacked that this has even occurred. Especially, when you're not really given adequate warning. I believe maybe China dropped the ball on warning the rest of the world. What a shameful thing. Millions effected. It's unfathomable that this all resulted from one area. My mouth is still a gape.
P.s love the walking. I just get bored I’m a tv person. But I have to say. I hope this doesn’t turn into months and months. I’ve saving some binge watching But it’s getting desperate! Ugh
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Candy, the only problem with the chocolate was how it was packaged. I got 7 bars of chocolate. They are larger but not huge. They put them in 7 separate boxes. Ridiculous waste of packaging but they are very nice tasting. Going to compare them the next time I need to get supplies at my local store.
I was tempted to ride a bus to walmart for the cheap chocolate since buses are free but decided against it. I will stick to shopping 2 stores in person. My valumart which is 15 mins away. Would go at 8am if I think I need things. Not so many people and my Harvey's for snack size burgers that I can turn into really good meals. I don't need to travel all over the place risking more chance of picking up disease and delivery of groceries is impossible due to high demand.
My need for the outdoors will consist of outdoor walking. The streets are not busy and I usually stay on the road if I must pass somebody who is on the sidewalk. I also have to reign in my sweet tooth. I will get fat before the isolation is over.
As far as people seeing family, outside of people in care that may have an outbreak, a great idea would be to have family meet in a driveway or pre determined outdoor space and stay the 6 ft apart. Otherwise, the isolation is way to depressing. We are allowed a group of 5 people. You can still talk, bring coffee from home and connect if doing it online is not enough. It requires people to have transportation but I think is a good idea. Also enforces better compliance with staying home more. You can be outside. Just avoid crowds as much as possible.
I still think this covid 19 certainly could give insight into what cancer patients deal with all the time. A lot of stress of the unknown. Having to learn to take it day by day. Most people have not figured out how to take the day by day and still buy up essentials in an effort to make themselves feel better, knowing they have supplies. I don't think stores are closing down anytime soon, at least here.
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Hi Lily!
Philly I am so glad you and your friend decided not to meet on the trail. Your reasoning is perfect and smart. Soooo glad the Zometa went well. I had neglected to tell you to take a Claritin a day before, day of and day after becuase sometimes you can get a fever and chills and body aches ( I did the first time). But it sounds like it went well. I have had 4-5 treatments so far and I still do the claritin just in case.
I love the telephone visits and zoom visits with the doc right now. I canceled the radiation oncology visit for this morning. I was going to try and go but my back decided a few days ago to start hurting pretty badly accompanied by a few weeks of not sleeping or eating very well. The RO called back and asked me why I canceled - we talked for a few mins and he said 'lets just let you get your back pain under control, and through to your next scans to see where you are at'. Talk about relief! I really didn't want to go in there. But now how about labs? Still gotta go in for that and I'm due for mine next week. Hopefully it'll just be in and out quickly. I know they are taking precautions everywhere in the medical offices but you don't know who has been where, who may have been infected. I think a poster on another thread mentioned that three employees at a nearby cancer center had been tested positive. Imagine how their patients must be feeing right now.
I read an article this morning that the CDC is considering recommendations to wear masks going out in public for all of us. I am so happy to hear about this. A Washington Post article stated that there is no evidence wearing a mask will or will not help so make your own choices. But it will certainly keep droplets from spewing around in the grocery store.
I started Gabapentin last night for back pain. I had been putting this off thinking I had to taper off my evening xanax (for anxiety/sleep) but the palliative care NP and I had an appt yesterday (me crying in pain half of it) She said au contraire you can continue taking xanax with gabapentin and you can take oxycodone in there too. I'm waiting on the oxycodone for a bit. I have several reasons and talked them over with her. Anyway the gabapentin didn't help me much for sleep but it did help about half the areas where I"ve been having pain. My low back has severe foraminal stenosis (pinched nerve) and it is waking me up several times a night and keeping me from daily activities. Hopefully as I build up the dosage over the next few weeks it will help more. My heart rate and BP have been higher than normal with this pain. Advil messed up my insides and Tylenol I should not take because my liver enzymes are always high. And there's no way I'm taking Aleve after what Philly went through with her tummy. So I'm taking the smallest dose of Tylenol at night just to help keep me asleep.
DH has to do the grocery shopping today and he's ready with mask and gloves. He is really scared to go the grocery store and I do not blame him.
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I did find out when I called my local Walmart that if I wanted to shop during senior, disabled and vulnerable opening hour, I am qualified to do so. I don't need anything yet, but will keep that in mind. They open at 7 so there would probably be nobody on the bus if I did decide to go. So I am good for just showing up to both valumart, my nearby grocer and also Walmart as well. Good to know different options since as I say, delivery of actual groceries really is not possible.
I do wish these rich corporations like Amazon or especially Instacart or other grocery delivery services offered their people hazard pay besides masks. They don't need N95 that health care needs, even paper masks would keep them and others safer than without them. Some are walking off the job until these are fixed and I cannot really blame them. They are in public a hell of a lot more than I am.
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