My Husband, My Life, My Love, My Family, My Cancer
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AJ & nine congrats for the good news. That’s awesome ! We love good news. We need good news. It helps , this has been a hard few weeks for some. Dodgers I’m thinking of you. Hope every one is having a good weekend.
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Yipee for all of you lovely ladies with stable scans, awesome!
AJ So excited for you planning a trip, how wonderful will Antarctica be! Can't wait to see your pics.
Mara I am so happy that you have the option of paratransit. It's the perfect option for you.
irish Sorry to hear your struggling, hope you get relief soon.
sunshine Have a great time at your neighbors party, it certainly sounds like a god time. Enjoy! My specialty pharmacy actually sends my xeloda with freezer pack on hot days. Wish they would all do that! Lol the what about Bob reference cracked me up! If anyone wants a good laugh watch that movie..funny.
mel I bet the pup is tiring you out but how nice to be worn out from Theo😍
Hi to all here and hope your having a peaceful day.
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Hi everyone. Yes indeed some good news and oh trips planned and transits to take care of our gal. Neighbor parties and oh it's good to hear summertime fun. In everyone's pockets for your needs.
Dodgersgirl, I hope that you have good news with a new treatment plan. We are really praying for you and your whole family.
Ah Theo, give your Mama extra vitamins. That's what we call puppy dog kisses, vitamins! What joy a little puppy dog brings.
I'm still under the weather. Bed for the day. I'll do the Claritin in the future. I know they always push tylenol at infusion, but I hate uncoated tylenol they hand out (stomach). I remembered this time to take coated about 2 hrs before but it didn't help. Tomorrow should be better. I get my one week off Ibrance starting tomorrow and no labs, shots or Zometa for a couple weeks. Neuro visit Tues. DD and GD went away for weekend so it's really quiet.
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Happy to hear of all the good news in Mel's Living Room. I am thankful when someone in our group can post good reports.
I am still having the nausea. It skips a day here or there, thank goodness, but a lot more nausea lately than what I have had in a while. Hum.
Yesterday was another event I had to miss at church. Our town was doing an event for back to school— free dental exams for the kiddos, backpack giveaway, plus other things. It was at our City Park. My church was assigned to have a booth with free lunch— burger, chips, and a brownie in a brown bag. It was a hot steamy day— temps in the 80's with lots of humidity (even a brief shower during the event, then the sun came back out- steamy). I could not have gone. I was nauseous. I cannot handle those temps. My mind wants to do all this stuff, but my body cannot anymore. Then, I start to wonder what other church members are thinking about me. Are they frustrated that I am not helping?- - we have a small church and everyone is needed to pull off those events. It just makes me feel down.
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What good news to hear about negative scans and reassuring visits w/RO. Good news has been lacking for some time (except for cute Theo). But the struggles remain real….Irish - it’s probably helpful to have a quiet house right now with being under the weather. I hope a day in bed brings comfort and strength. Emac - hope you are able to get sugars under control.
Dodgersgirl - keeping you in prayer as you move forward. In fact, I pray regularly for my MBC family, all cancer patients, but especially the kiddos w/cancer.
Sending hugs to all of you🤗🤗🤗🤗🤗2 -
Candy, I am sure you are discouraged to have to miss a church event. I went through a long time of struggle on this same issue, but eventually have accepted my situation. Those who really care will ask how you are doing, and you can be honest. They will understand. If they don't then it is their problem. I cried many tears when I finally had to stop singing in the choir and playing my cello, and serving in other areas. God understands, and that is what is most important. I will pray for peace for you that you will find a new form of service.
Dodgersgirl, you are in my everyday prayers.
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Good Morning Gals, Happy Sunday and Yay for Positive scans😊
@mara51506 Yay for Paratransit!
@micmel I love puppy breath🥰
@AJ Wow ANTARTICA awesome! Now that is a trip💯
@dodgersgirl I hope you’re reading nd keeping up. I say prayers each day for you, that you will find the strength to overcome your immense struggles, and that your family is giving you the loving support you need right now🩵🙏
@goldensrbest , Hi girl.
So yesterday was another do nothing give into the tiredness and bathroom trips so didn’t feel like going out with DH to do some food shopping. The only thing I accomplished was working on one of my paintings. That is the one thing that gives me peace and joy during these feelings of wanting to isolate.
Today I’m looking forward to having dinner at my Son-in Law’s restaurant, with my daughter and dear husband… I will enjoy an Expresso Martini with a dollop of whipped cream. My SIL runs the bar in his restaurant and makes the best Expresso Martini and always puts the whipped cream on the side… Here is a pic of me and DH at the restaurant 5 years ago. We always have a good time there.🥰
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Oh Shanagirl - You and your hubby look like you were having such a nice time! Hopefully, you'll feel a bit better soon and you can do something like this all over again!
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lovely Shana!!!! Such a pretty woman ! You look great together!!!!
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Candy,
Just a reminder-we are saved by grace, not by deeds and are called to love one another. I hope that no one is judging you for not being able to be physically active at church, but if they are, it's on them, not you. God loves you and knows what you are going through. Sometimes the most useful thing we can do for our churches is to pray-pray for the students and teachers who are going back to school, and for the events. Please do not beat yourself up. You know that you are doing your best and that it is enough. May the peace of Christ surround you.
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Hi everyone. Hmm, found a trick to this heat. Stay awake till 2:30 a.m. then go water the flowers, animals, etc. It's 80 now. Doable. The cat came in to eat as she saw the porch light. So another win.
Still dealing with head tremors, brain crush, yada yada. Decided to do a medical journal to keep track of these neuro symptoms and what drugs are or aren't helping. Last year I was on 1 RX, which was off label LDN for MS. This year, I owe my soul to the pharmacy. I did find relief in the anti-anxiety med, atavian. My mind goes in circles and the fear of "losing" it keeps feeding my brain. That's new and exhausting. Steroid taper, steroid nasal spray and probably left over solumedrol feed into the anxiousness. But I haven't seen an improvement on the neuro problems. I go from chair to bed, to potty and DH feeds me. Not a good quality of life at this time. Patience and that new, neuro is on my wish list for Tuesday.
Waving to all you lovely ladies. Shanagirl, you two look so handsome together. Hope you enjoy your son's restaurant.
DG lost one of her mice in the house. Cute story coming up. She left with DD and SIL for weekend, and took her other mouse. Poppy has been missing for a week and I thought the worst. I started to ask DH to go buy a replacement but he didn't want to go out into this heat. Well DG came home with POPPY! I thought oh Mom and Dad replaced Poppy. But no she had hid in a Barbie caravan and house that were taken on the trip and finally came out staggering looking for a drink. Crisis solved and Pippy and Poppy may have more adventures together. lol
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Shana - lovely photo! You both look so rested and refreshed. Enjoy that tasty martini!
Oh Irish - so sorry for the continued neuro issues. Pocket duty for Tuesday. Hope you get some answers. Cute 🐭story!
Candy - ditto on Chicagoan’s words. The homily at yesterday’s mass was so helpful - it centered on how God wants us to move on from our traumas and not relive them in our minds over and over. Easy to say but hard to do, especially since the trauma of MBC comes with daily reminders. We have been attending mass every Sunday and I feel ready to rejoin the choir when rehearsals start again next month. However I’m starting to waiver given this new covid virus that is going around. I always end up being neutropenic during my week of Ibrance and don’t want to risk getting sick. I know that God has got our backs in this mess but it can’t hurt to help him out!
Hope everyone’s week will be calm and uneventful.
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Thank you to you lovely ladies for your support. As Goldens said, "God wants us to move on from our traumas and not relieve them in our minds over and over". Boy, He must be frustrated with me !!!!!
I too think I am going to hunker down again this Fall/Winter when Covid and the flu are bad again. Watch the online live stream of my church rather than going to the service in person. There are some Covid cases in our area now, I guess another variant, but I went to church. Masked, of course. I don't do much else during the week- - go to Library for a stack of books for home, or swing by the Dollar store for a gallon of milk. I still do grocery shopping with ordering online and curbside pickup (due to my hip and not wanting to try to walk in the store aisles). I stay neutropenic all the time due to the Lynparza- you don't get a week off, it is continuous dosing.
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Irish, sorry you are dealing with those issues as well, they are definitely tough to deal with.
Candy be as active as you are able and don't feel bad about what may be beyond you right now. Easier said than done but guilt and worry are emotions that do nothing for you so I am in your pocket doing my best to beat those away.
Mel, glad you are enjoying your dog, animals do make us feel better.
I am not sure what to do today. Since we are not getting mail to the building due to road construction, will start walking back and forth to the bus stop as that is how I will need to get there. Check for mail on Fridays. I don't get too much anyway, mostly flyers.
Other than that, not sure what else, have the laundry going, Fire TV ads for money, surveys and whatever else. Even the computer is put to work making some money playing baking videos and paying for the ads that play. Not much for these but they all add up. I even pllay games for a bit of paypal. Gives me extra for groceries. I just managed to fix a horrible jam in paper shredder. Took a couple of days but got it working again.
Almost finished the ground beef, ground it up with beans yesterday and added to a meat pie. Ate a couple of smaller meals after, both involving eggs were good. Will probably order some eggs this week, my brother got a new job, swing shift so shopping may not happen. As regularly. Probably start with larger shop once a month and stock up a bit at a time. Been doing new exercises for PT, got them from Bob and Brad on youtube. Also learned to strengthen ankles by moving my feet side as well. Already watching winter walking videos as well to prepare for the upcoming season. I do have a nurse visit today this after noon. Busy week with Herceptin Wednesday and Occupational Therapist Thursday. Friday will check for mail. I did it before when apt building was under contruction, can manage again.
In pockets for anyone who needs me and hope everyone has a good day.
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I'm almost embarrassed to ask, but have any of you applied for a disabled parking placard? I think I want to do this, just because it's getting harder to walk distances. If I got the hanging type, as opposed to the license plate, I could use it in both of our vehicles. One advantage would be not having to pay for parking at the clinic. I did message my PCP to see if she would help me with that.
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Sunshine, yes, I have a parking placard. I originally got it when I was struggling on a previous med, but I renew it now. It helps a lot. Sometimes I feel I take advantage of it when I don't need it, but there are days I do need it. It also has its perks like not paying for parking in some places, and closer parking at fairs, etc.
Candy, I am reluctant to go to church too with Covid. I am usually the only one in a mask, but there are too many people who are not mindful of others and come sick. I just can't afford to get sick this way. I am also on oxygen now and don't want to impose the noisy concentrator on others.
I may need to start ordering groceries online as it is increasingly difficult to get around, especially while on oxygen. I send my DD sometimes but since I do most of the cooking it is not as good as going in person. I just need to accept my limitations.
Praying for everyone with appointments this week. May God accompany you with His peace.
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Shanagirl Hope you had a fantastic dinner! Beautiful couple🤩
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I do not have a parking placard. I have thought about it. I am sure that my ortho would sign something— my severe arthritis of the hip and the need for a hip replacement. Or my MO— for the ongoing cancer treatment. But I just do not want to do it yet. I don't want another reminder of my declining health.
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intolight, thank you. I do feel a little guilty for asking my doctor, but that's OK. I did get a message back from my PCP that I need to be "seen" in order for them to fill out the paperwork. It can either be in person or virtually. I have an appointment with my MO in September, but I may try to get something sooner.
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you know I’m beginning to think cancer always wins. I’ve literally hit a wall. My back is killing me and I feel like need days of sleep. My body isn’t used to this movement and level of activity. It breaks my heart to think of something so happy being ruined by cancer. I have so much fun with Theo. I’m already in love with him. I’m having trouble walking him because my spine is screaming at me. The simplest thing I am just not able to do . My DH is a wonderful man. He’s been incredible even though I know he’s tired too. I just hope this is an adjustment phase. I’m so upset. I haven’t been in this pain since diagnosis. Cancer wins and ruins everything again. I hate cancer period. It’s a thief. Of happiness and life.
Thinking of you all.2 -
Waving hello to everyone 😊
Maybe just maybe I may be able to continue with my original username
Shana- beautiful picture
Mel- I know what you mean about the extra activities that come with owning a dog again. I am up and down like a yo-yo with Belle. She is very strong and pulls me when walking. My back is in so much pain my husband has taken over most of the walking duties. I have ordered a harness to stop the pulling but we will see. They are bundles of happiness though. When I try to lay on the sofa she ends up stretched out on top of me.
Irishlove- the mice story is so funny 😁 glad everyone is back together
Candy- about being able to do things you use to do; when my dd and sil were here they wanted to go here and there. Some places I went and others I had to back out of. I told them I didn't have to explain and apologize for not being able to do things. My daughter told me she still wants me to have a purpose in life!
What is our purpose in life now? I know to keep enjoying life but it keeps getting
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I don't know why it is dropping words. Should add harder at
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Livingivlife- I am sorry you are having trouble posting. But I think I get what you were trying to say. I too wonder what my purpose in life is now. I sit at home mostly. Even if I go to church once a week, that is not much. I just don't know what good I am doing by living alone in my house with my cat.
Mel- I am sorry you cannot enjoy Theo like you should be able to. I have never owned a dog- - the chore of walking them. I do have "chores" with a cat- -cleaning the litter pan. But I cannot play with him like I should, though he sleeps a lot at the age of 13. 2 old farts in the house, I guess.
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Well I for one gave up on church because of all the FLorida rules against masks or poking fun, via courtesy of the Gov. at young people wearing masks. I don't even see chemo nurses wearing masks. I wore one the other day and not one medical person was wearing one in the cafeteria. I listen to my favorite youtube spirituals and enjoy my spiritual readings. Home is where the heart is, as they say, and with the next round of covid, the healthiest place to be. As for getting over trauma, come walk a mile in my shoes and then we will talk. It's like telling someone to get over the death of their loved one in xxx amount of time. Fooey.
AH Mel, I'm sorry your struggling with baby Theo and this body we have to live in. He'll be a big boy soon and pick up on being gentle, his breed is a good training breed and maybe be a support dog. Give it time.
Is 600 mg gabapentin too much to take in one day? I upped my dosage as I just couldn't get thru the day and the rx calls for usage at nighttime. So I did 300 at lunch and 300 at dinner. I'm only prescribed for 300 daily but will talk with MO about this. Actually I'm using it for bone pain and severe spinal burning pain, sure it's MS related. So one or other doc hopefully will be willing to up the intake for q.o.l.
Definetly get a placard. It's not a matter of justifying the usage, it's there for a reason and that reason is you may well need it. If you are having a good day, ok. But one thing I learned from MS is that I can be doing ok in the store and the overwhelming fatigue hits me. The price you pay to walk in this extreme heat can also overcome you.
Waving to all and in pocket duty. Hope you have a peaceful, pain free night.
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Mel - I think the joy of Theo will eventually outweigh your frustrations. Perhaps reconsider working with this new dog with your 'new' body and avoid comparing with how you would have interacted with past dogs in your 'past' body. I know its really hard (and its something Im struggling with at the moment as well) but I guess its no use ranting about what used to be when we are stuck with what is. But I wont deny that the feeling of unfairness doesn't break through more than a few times.
Re: new Covid strain, my aunt and uncle flew back to the US last thursday and informed us yesterday my uncle had Covid. They think they got it from the plane, but I think its much more likely from packed busses and tourist attractions here; we saw them on Wednesday for lunch and a walk so hopefully not TOO exposed if he didn't get it on the plane. Ive noticed a lot more people coughing and made sure to wear a mask at my scan appt yesterday.
Its sunny today and Im starting my off week and hubs came home yesterday evening so things are a bit better. Yesterday I had a complete breakdown on the tube platform of all places, after my scan. The volumes of people moving through the station this time of year are so high, and trying to navigate with a cane is tough as you can't always hold on to a railing going down the stairs. People seem to think its Disneyland and lack any and all awareness that people DO in fact live and function in the city and it makes me stressed, especially as I cant turn quickly to miss people staring at phones, taking photos of themselves, or their children running all over the place. At least mom was there to help calm me down but I think Ill be asking for valium or something for certain moments. I dont want to be on yet another damn pill for anxiety when Im more or less ok or can manage until there are points I just… cant. Lately it feels like I I am being repeatedly punched in the face over and over with crap news or medical drama - I want a break!
Dodgers - thinking of you and I hope you have found a workable and peaceful solution for your situation. Best wishes, friend.
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I have the form filled out for the card. I just never got it notarized. My DH usually drops me off at the front door. I’m not a real big driver anymore. Too much medication going to feel completely safe. I worry about that
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Anyone debating a placard to park in handicap spaces. If I had a car, I would jump to get one.
Mel, I am sorry Theo is a handful, hoping it calms down in time for you.
I am sitting in the house doing the usual moneymaking stuff, games, TV for ads and surveys. I am also doing PT and will march inside as it is raining heavily. Planning a mail check at post office possibly on Wed due to already being at the hospital. Does not require to much walking. If I feel tired from that, just take bus home. I have a load of laundry to do, need to sweep floor and vacuum. Going to order extra eggs as I don't need much else, having trouble figuring out what I want and getting to the minimum spend but I will figure it out.
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Micmel, I don't drive anymore either, but the placard still helps. My DH also has a placard for his knees so we are double-covered. It helps him too so he can wait in the parking lot close enough to see me when I am finished with my appts.
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Mel, also, Theo will settle down. It is worth it. Our Princess is finally trained. She sits with me on and off all day since I am the one in the family who is home the most although she prefers our DD and GD when they are home. She seems to know when I am having a bad day and walks with me everywhere throughout the house. Her breed, maltipoo (maltese poodle) is often bred for comfort. She is very friendly and smart. I have started walking her a bit which is good for me. We are fortunate to have a yard and installed a doggie door so she can go in and out at will.
Sondraf, I worry about the new Covid. I rarely see anyone here with a mask. Colorado has always been a bit rebellous with Covid, much more than when we lived in California. But I wear one for me when necessary. The hospitals here have dropped their mask requirements as well although my DD has to wear one most of the timed as a nurse working in a children's hospital. My DH works with ham radios and is into emergency preparedness. He just learned that about one-third of the population in Grand Junction (about 5 hours away) currently has the flu so we have to worry about that now!
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Sunshine, I have a disability placard, actually they gave me one for each vehicle. My MO had to complete a form but did so willing do to chemo fatigue and an arthritic knee. I feel a bit of a faker using it, so I limit it to days when I need the shorter distance, especially when my torn meniscus is acting up.
Had treatment yesterday but we went to El Paso Sunday to see a movie (The Meg 2) and Texas Roadhouse for dinner, it was nice. Not much planned for the week other than the usual chores.
Thinking of Dodgersgirl and waving hello to everyone 🙂
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