My Husband, My Life, My Love, My Family, My Cancer
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Irish, I get it about church. I haven’t been since COVID and my MBC diagnosis which were both in March 2020. Interestingly, there was a group of, if you can believe it, worship leaders who refused to wear masks, despite requests from the pastor. They’d sit on the front row with their hands raised, singing but would never wear a mask. They might as well as have had their middle finger raised. They ended up moving to Florida because the political climate suited them better. I still haven’t been back.
I have a video visit with my PCP on Friday and will ask her to sign off on my Disabled Person placard. One thing that will be nice is not having to pay for parking. I noticed that when we drove to the bay on Sunday that there were several disabled parking spots. That would be nice not to have to hunt for parking. I don’t do the driving, but I still think it will be nice to have – even if it’s a neighbor who is driving me. Our last two trips cost the max parking fee since we were there so long in Urgent Care.
It’s nice to hear your input on this. I still feel a bit guilty, but I’ll try to get over it. LOL How does the parking work? I know there are designated DP spots, but how do you exit the lot without paying if there is no attendant? Scripps has some kiosks, but we’ve always just used a credit card or had a validation card on my infusion days. Just curious how that works.
DS was here for a few days. He had been visiting other family on the east coast. Hopefully we all stay healthy. DH is driving him back to Bishop today. (He’s the one who watches Hallmark movies with me.)
Slept a little better last night. I crashed really hard yesterday and slept for 2 hours in the middle of the day. I was in the den and didn’t even hear DS and DH coming and going. I must have been really out! Am still having trouble eating. I made instant mashed potatoes yesterday and kept adding more liquid to thin it down. I made a smoothie this morning with Ensure, peanut butter powder and protein powder.
Waving hi to everyone. I hope everyone has a peaceful day.
Carol
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I have had a disability placard since dx w/adult onset scoliosis in 2016. My PCPs have been happy to sign the forms for me. I prefer to have the hanging card as I can take it with me if someone else is driving.
Mel - our youngest golden will be 5 next month and I remember struggling with her when she was a pup. I was having a severe back flare up with sciatica and couldn’t wait for my hubs to get home to help. Hope it gets easier for you. It is so worth it in the long run❤️❤️.1 -
he is super cute!
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Mel- he is so super
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So much going on. For those missing outdoor events because of the heat, the humidity, the pain, the risk of germs, I'm sorry. I miss my old life, too. And I'm feeling relatively good now, but I still can't handle the heat like before, and sometimes it feels like the world is moving on without me, forgetting me before I'm gone.
I try not to dwell on that. An old friend came through town and we went to see the Barbie film. Laughed a lot, enjoyed the fashion, and I hope there is a Ken sequel, with extra musical numbers.
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I finally ventured out today with my DH while he activated his Ham Radio from Cheyenne Mtn. It was 80* with a light wind…perfect. Then had dinner out before returning home. We basically were alone except for dinner. Priceless!
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Hello and waving to all you folks. Hope it's a good evening and some heat relief has come your way. We finally rec'd a rainstorm, not much but did cool things down a bit and the birds were happy to play in the puddled water. In everyone's pocket for pocket duty.
Had the new neuro appt., Oh my did I find a great neruo. 1hr and 15 minutes, asked questions, took questions and shared something I just have to share with you all.
He said that is a lesion on the occipital bone. It shows enhancement. His guess was no rads as it appeared older and was shrinking and as we know radiating the brain is not without risk. Maybe I misunderstood my MO as I thought he said it was an old injury with a "dent" in my head". Hmm, well guess no one's too concerned, so that's fine by me. He felt the brain MRI was good. As patients age with MS, we settle into secondary progressive MS, minimal distinct attacks and patients drop any type of disease modifying meds. So he is not adding on to this overwhelming number of drugs I take. The chemo is helping with MS. He felt this could be stress related with inflammation. He's setting me up for a new anti anxiety type med that I can take in the morning, as I have a difficult time getting thru the day to take the night time meds for relief. I'm telling you he do the most through exam I've ever had in my lifetime.
Then I asked a question and he clocked out and we talked personal. My question was can this be related to the depletion of estrogen in the body and hormonal change and will I get back to being a bit healthier. His wife was "committed" to a physch ward for a very serious reaction to Tamoxofin. It took a while but they stabilized her and she no longer receives any type of SERD. He said it was very frightening to see her personality not only change but develop physchosis. I thought I saw a co-orelation between the shots and symptoms with this intercranial pressure, head and hand tremors. Let's see if the new med will help. Also, he's opposed to jumping on solumedrol for MS without an MRI to back up the need. Hard to the body. He recommended cancelling the EEG, says it's a monetary rip off if you don't have deep brain seizure activity, which I don't. So I'm satisfied.
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If you can get a disability placard pls apply for one. Like illimae, I sometimes feel a fraud when I am having one of those lovely ,rare, good days but post chemo or other issues it is such a help.
Sondraf sorry to hear you got stressed out on the tube. I hate crowdwed places now, my very poor balance added to old age grumpiness means I try and avoid busy places. I would swear and 'have a go' at the phone users and those lacking in any idea of personal space and that isn't good for my mental health. Take care with the tourist crowds in London this summer.
Good wishes to you all, but particularly to you Dodgersgirl.
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Mel I woke up to that adorable pic of Theo gazing at me! Love him, he is a cutie!!!😍
intolight Your pic is gorgeous also a lovely vision this morning! Glad you had a wonderful day.
irishlove Yipeeeee finally a thorough Neuro visit! He sounds great and I love his responses, very sensible. I hope he is able to help you and calm down these symptoms. Interesting but scary story about his wife, ikes.
ninetwelve Glad you got to the movies with your friend and had some good laughs. There is nothing like a good laugh to brighten your day.
sunshine Glad you had a visit with DS lol love that he will watch the Hallmark movies with you. Ugh sorry you are still dealing with the eating issues. Still hoping things will get back on course so you can enjoy a decent meal, fingers crossed.
Dodgersgirl Think of you daily❤️
Emac Hope your sugars are coming down to a normal range.
Shanagirl You'll have to post a pic of your artwork when finished. What a beautiful talent to have.
Hi to all here, Wishing everyone a blessed day.
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into~that view is spectacular, I love Mountain View’s. Ty for sharing.
cookie~Theo was kissing my nose at 6:09 am he better be cute lol.
nine~nice to see you , Irish~ hope you’re doing good.
Denny~ also good to see you too!
Hello Mara Candy Mae. Goldens. Tanya, living,sunshine, and all lurkers and the rest of the living room lovelies! Hope you have a pain free happy day. Hugs to all. !! 😍🧁0 -
Oh Theo, you are so stinkin’ cute❤️
Irishlove - what a great neuro you found. So glad you got so much info from him. Hope the new med will help.
Intolight - beautiful, peaceful photo.
Happy hump day 🐪🐪0 -
When I logged on this morning, the first post that I saw on here was ninetwelve's post. And, oh my gosh, I had just said the same words to my sister last night on the phone with her!!!! "sometimes it feels like the world is moving on without me, forgetting me before I'm gone".
Someone well known in our community died recently. I did not know the family well, but as a well-known person in the community, I was thinking I wish I could go to the funeral. My sister and her family were planning on going, and she did not even call me to ask if I wanted to go with her. She knew I would not- - crowds, germs, my mobility issues, etc, etc.
And, another example, we had a church event I posted about on here- a back to school event. I was not planning on going- - the heat, etc- - but I later found out that some of the ladies got together and did some prep work before the event- in the church building, something I could have done. But no one asked me if I wanted to help. I know they didn't ask because I don't want to ever do anything.
But I don't feel good. Heat intolerance, nausea, GI unpredictability, fatigue, germaphobe. And my hip issues and mobility issues. Sometimes I feel that when I do die that people won't miss me, because they are already used to life without me.
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Mel Theo is adorable.
I have Herceptin today, thankfully my body actually let me sleep instead of just barely dozing. I always worry I will miss the morning app't. I will walk up to the closest bus stop, need to be able to walk some.
I was lucky got laundry done as water shut off from 9 to 4. I really should check the mailbox even if we don't get mail during road construction. I had a couple bottles of water to brush teeth and enough to allow for handwashing.
Luckily, the stop I am using has 3 different buses on detour at the stop to reach hospital so should not take long to get there.
Have a good day all.
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Oh Candy, I am so sorry you are feeling so down. You are a valued person, you just need to find your new spot. Is there one person at church whom you can call and ask to keep you in the loop? Be honest with her and let her know what is going on and that there are still some things you can do but you just have to be picky. Let her know you miss them. See what her reaction is.
Irish, such a win to find a good neurologist. That gives us all hope!
Mel, love the Theo pictures. He already brings you much joy.
Cookie covered all the bases this morning so I will just say hello for the day. I am staying in and recovering from my outing yesterday, and praying for you all. The workers are here and working…yeah! Maybe they will actually make some progress on my deck today.
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Intolight- I did just that. I called one of the ladies, with whom I consider a friend, and told her I could have helped with the prep work. She said it was the spur-of-the-moment thing that was not really "planned". That some of the ladies just talked and decided to go get some things ready for the event. I mentioned to her to keep me in mind for another time. And explained my need for "pickiness" and the lack of ability to do most things. I will see if it makes a difference next time. But I do feel forgotten about.
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Ninetwelve, I’m so glad you were able to get out with your friend and that you enjoyed the Barbi movie.
Intolight – WOW! That’s breathtaking. My DH also got his Ham Radio license years ago. Your day sounds amazing.
Irish, I glad you found a new and attentive neuro. His wife’s experience with the Tomoxofin was frightening. I can’t even imagine.
I think I slept better last night, but woke up with the coughing this AM. Will try to get to the store today, but I’m not sure I have the energy. Weight down again today. Boo.
Candy, some days are just too much. And it’s so hard to predict how we will feel tomorrow or the next day, or the next…
Mara, I hope your water is back on. It’s funny how we (or at least, I) take running water for granted until we don’t have it.
Waving hi to everyone. Wake me up if my snoring gets too loud or if I start drooling on mel’s pillows!
Carol
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The water was turned back on by the time I got home, successful bus trip both ways and walking was not too bad, even in the uneven parts. Only annoying thing was the return of the Big D. Was quite unexpected and gross, will take immodium and ask for a prescription from MO. I blame herceptin as I was not able to prepare for it . I think more nausea meds might be good too. I should be a better tomorrow. The digestive enzymes do have some value as well. I don't feel too bad either, earlier bed time and fluids should help.
Overall, getting over the dug up road is not bad, still heat up in weather so glad I am taking the bus.
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Laundry and housework, mobile games for cash, going for walks for 2 mins every 20 mins, just a march and PT exercises. Need to bust out an arm work out to work on hoisting me up. Having push strength in arms will go a long in helping to push me up if I fall. I had no trouble walking yesterday. Will be going to check for mail tomorrow. Same bus for hospital brings me to the place to check on it. I get so little mail but am looking for paratransit stuff.
Made an egg mcmuffin with garlic, too my 1/2 immodium. Learned when doing the muffin with the egg, only one should be used and continue toasting english muffin . I am also going to take a couple of hotdogs, cook them up and add to beans and rice later. Going out with DB later, will ask to go to my other grocery store since I have enough money in there to get some things.
I had a really good visit with OT today as well. practiced getting up off floor twice, was able to get to the floor easily and on the first one, put my forearm to use to propel me along with my leg. First one looked like a normal person getting up. Second one was a little tougher but doable. If I want to practice later, will possibly use it during nurse visit and when DB takes me shopping.
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Sending hugs, good thoughts and much strength to all you wonderful people in Mel's living room 🤗
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Oh, yuck, mara on the big D! I hope it resolved quickly.
More coughing last night – boo. Weight down today, more boo!
I filled out on the online application for the DP parking placard and will get it to my PCP to fill out. She’s close, so I can email the form to her, have her fill it out and then pick it up and go straight to the DMV. Apparently, I can walk in to the DMV without an appointment for that.
I hope everyone has a good Thursday.
Carol
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I was talking to one of the church ladies from my church on the phone today. She heard that Covid is increasing in our area. I had heard on a national newscast that cases were up 30% in the U.S. But I had not heard of specifics in my area. Good grief!! It is only mid-August. I knew that in the Fall/Winter I would need to hunker down, but I was thinking October/November. Not yet. I got my last booster last Fall and was planning on getting another booster this Fall. I wish they could find something to halt Covid. My white counts stay low on Lynparza. I don't want to end up sick, or even in the hospital. And I am tired of worrying about it and second guessing if I should or should not go places. And no one in my area wears masks, because we politicized Covid. The public would rather get sick than be caught wearing a mask and be "one of them".
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Thank you mods!
hello lovely ladies! Sending hugs.0 -
Hello to the living room! Boy have I missed a lot! Things are going okay here. I have been really struggling with the weekly Taxol and figuring out the timing for the onset of effects. I finished infusion 3 of 12 today and if the pattern stays consistent expect Saturday and Sunday to be bad and hopefully rebound a bit on Monday. I just feel like a rag doll with periods of vomiting for about 3 days post infusion and then I seem to bounce back on Tuesday and Wednesday only to infuse again on Thursday. There is a light at the end of the tunnel though. First week of November I am done. I am officially bald again. I had been told not everyone loses their hair but I lost about 2/3 of my hair after infusion 2 so the remainder was buzzed. It's always a bit odd at first but not nearly as traumatic the second time around.
Yesterday was an amazing mix of chaos and blessing. The casing on the water valve that runs water to my backyard from the main water line cracked and I discovered my water box had flooded and was running on to the patio and under the house. I have no idea when it happened or how long it ran like that but it was a while based on the amount of water. It must have happened when I was at the cancer center for labs. I know enough to get down there and turn the valve off but since the casing was cracked it didn't stop. I had to run around the outside of my home and down the sidewalk to the main water valve behind my fence and turn it off. Long story short, I was able to call a guy from church who was able to come that day and cut off the old valve and secure a new one to the pipes. It saved me several hundred dollars not having to call a plumber. So while I was exhausted I feel enormously blessed at the same time. It hit 108 F yesterday and we are socked in smoke from the CA fires south of us and larger fires north. All of this happened before the heat really amped up and the smoke had not yet gotten thick so I'm grateful for that too.
@irishlove I'm so happy you found a good Neuro. You were due someone good!
@sunshine99 I have a placard too and I keep it in my purse. I don't use it when I feel good but it's good to have when I don't. Like Mae I sometimes feel awkward using it but I have also used it with my mother who has mobility issues and that has been a benefit too.
@mara51506 I am so glad your water is back on. Having to turn my water off made me very aware how grateful I am for that simple pleasure.
Sorry for the rambling post. I hope all are having a better week and in pockets for those who need it right now. ❤️
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Sent mom home yesterday and ah the bliss of a quiet home again, just hubs and me n the two cats(+ day camp kitty Leo from the neighborhood). Our place is just too small for three adults even if its partitioned well and the sun meant you could open up the back doors and be in the garden. It was a really nice visit though and I actually felt like I had a vacation too. Now a day of recuperation, I was doing 6000 steps a day for the last four days (+ stairs) and thats a lot considering the busted hip flexors and lack movement to date. Supposed to be a beautiful weekend and next week (rain and storms today), so we are planning the usual grill a bunch on Saturday/Sunday and make a grain salad approach for the week. At the moment feeling like I want to actually research a real vacation for September/October, but lets see what Monday's MO appointment and results show and then decide.
Mara - I love making homemade egg mcmuffins - even better with a bit of canadian bacon on them!
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thanks for sending prayers, thoughts, hugs, etc
Wednesday was hubby’s graveside service. Now reality kicks in. Sigh.
Also i have now spent my first week in a rehab (aka nursing home) facility to get physical therapy so I can walk up and down a few stairs to get in and out of my house.
Currently I am restricted to bed so bed pans are my life. Hard to believe how quickly life can flip from where it was (hubby as my care giver) to where it is now (nursing home).
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@dodgersgirl Sending continued prayers as you adjust to your new norm. So sorry for all of your struggles. I will be praying you rehab quickly so you can return home. Hugs!
@sondraf Glad you had a good visit with your mom. Hoping your appointment Monday goes well.
I have Faslodex shots and Zometa today and a PET/CT on Tuesday. It has been almost a month between appointments…yay!
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Dodgersgirl,
Thanks for checking in. It sounds like things have been very tough. I hope that you will recover strength from PT so that you can get back to your home. Peace be with you.
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Emac, I am sorry that you are having such dreadful side effects. I could not tolerate Taxol myself. We tried twice but it was a no go. Hopefully they are prescribing ondansetron for the nausea, you should not be vomiting. In your pocket kicking out the nausea.
Dodgersgirl, you are going through so much with everything. I am glad they are giving physio to get you able to navigating the stairs and general getting around. I have not left your pocket at all.
I did have a good time shopping with DB, SIL and niece. Got tea at costco and some bran at my normal store along with a couple of unneeded but enjoyable laundry supplies. Trying out borax. Never used it before. A massively heavy rainstorm was on when we left Costco. DB wanted me and the others to wait but the guy working the door got really nasty about kicking us out. I understand but treat customers normally, no need to be nasty. I almost said something nasty but bit my tongue. Don't want to make the guy's job harder. I have a bad temper and am a person who yells, recognizing that, need to keep my mouth shut and do the 4-7-8 breathing to relax body. It eventually stopped raining at second store, got cookies there.
I will need to check mail so will go this afternoon. Thanks to all the roadwork downtown, I have a couple extra choices to get there and back so that works well, sunny today as well so not so bad. I am hoping my paratransit stuff is in there. Planning to check once a week as I don't get much generally.
Not sure if I mentioned it but OT visit went well. She says my legs are much stronger due to the exercises PT gave and the bridge pose she suggested to do in bed. Some days I can do all 10, each on held 10 seconds and some days only 2 or 3 which I am OK. Any floor yoga will be on bed. I also like ankle exercises as well. Will do some wall pushups as well to increase push strength and still use youtube as well.
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I’m catching up on posts as I’m waiting to check in for my video visit with my PCP. Let’s see how well I do with multi-tasking. My PCP runs late, but each patient gets her full attention. I forwarded her the DMV application for the DP parking placard. Hopefully, she’ll sign off on it.
Sondra, enjoy the peace of your quiet home.
Dodgersgirl, I’m continuing to send you healing thoughts. I pray for peace and continued comfort for you.
Intolight, I hope your appointments all go well.
Mara, I’m glad you were able to get out and do your shopping. Sorry you had to deal with the nasty guy at Costco. I’m glad your OT is going well.
Waving hi to everyone. I hope my coughing didn’t keep anyone awake last night. Weight was up a pound this morning. I’ll take it.
Carol
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emac, I missed your comment. What a pain with the water valve. I hope it is not an ongoing problem.
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