My Husband, My Life, My Love, My Family, My Cancer
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Dodgers- 🙏
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Dodgers - happy to see you checking in and I guess… going with the flow at the moment? It must be unimaginably hard to have such a double whammy at the same time, or consequences of one thing impacting so deeply. I hope you can do well at PT and get home soonish.
Ladies in southern CA/NV/AZ - stay safe with that hurricane and potential flooding. I grew up in the southwest (partly) and big rains in the spring were no joke for rapid flooding (even with the washes), I can't imagine 2-3 years worth in one go. I guess we will see how well some of that infrastructure holds up, but perhaps at least it can help fill up Lake Mead a bit!
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Well, took UBER as my morning was taken up with my wellness checker asking for cell phone help and then an unexpected nurse visit so thought I would miss bus to check mail. I did receive paratransit pass so have to pick up bus tickets for paratransit and get a picture so that I can ride free on regular transit. Another bit of good news I was told by the postal worker is they are putting a temporary mailbox closer to home which is good.
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sondraf Happy to hear you had a nice visit with your mom. Sounds like you need a nice rest with your DH and kitties. Oh grill a brunch sounds interesting and delish. In your pocket for positive news from MO Monday.
dodgersgirl Glad to hear from you. I can't even begin to image what you're feeling with all of this…big hugs.
emac Good to see ya! Cmon November…sorry to hear chemo has been rough on you. Wishing you better days ahead and extra strength to get to November. Wow, glad your plumbing issues were resolved and better yet for free! You certainly deserve a break.
mara Great to hear your getting a mailbox closer to you. That will certainly help especially in bad weather.
Not sure what the heck is going on with me and the big D lately. Weird it's been a couple weeks of back and forth , Imodium is helping, I've been off Xeloda for 6 weeks because of radiation but was dealing with this. Just restarted Xeloda again yesterday. Anyone else have D with radiation that wasn't to the abdomen or pelvis area? Maybe it's a weird coincidence? I also tipped on my float into the river a couple weeks ago and swallowed some water….yuck! Bacteria??Giardia? I have treatment Wed gonna talk to MO about it..we'll see.
Waving hi to all in the room😊
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Dodgers~we’ve been thinking about you and hoping you’re doing the best that you can. I am sending warm big hugs to you. I hope somehow you can get well enough to go home soon.
Hello Sondra, hello sunshine, Chicagoan, Irish, nine, Tanya, Mae, Candy , Mara, emac good to see you. Always. Cookie, Shana,living hoping you have a good weekend. I am playing with high speed Theo ! He’s getting braver. Two weeks we’ve owned him. Seems longer. He’s demanding for sure. But we love him. Hugs to you ladies2 -
cookie, interesting thought about swallowing the river water. Have you been tested for giardia or some other parasite. Who would have thought that?
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Hi everyone. @dodgersgirl Praying you are able to rehab and get to your own home quickly. Life does change quickly and we are so blessed to have or had such great caregivers.
Day 2 of 50 mg Zoloft and I think I'm losing my mind. I feel awful. Overly medicated?? I just want to stay in bed. I know it takes it bit to quick in, but boy what I give for a head that's normal, including normal thinking. Never been on a depression med before. I'm just not sure it's right or right dose for me.
Can someone tell me what the dosing is on flurvescent after 5 months? I think this is the culprit for all the head pressure, hearing loss and these damn tremors. Guessing… Gotta figure this mess out as I really feel my mental health has taken a huge hit.
Waving hi to everyone and in pocket duty for those in need. Please stay safe with the hurricane and flooding inland.
HI THEO… you too cute.
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Cookie, Do bring up the river water. That may be the problem.
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sunshine Do a sound a little crazy to throw in giardia lol? Maybe I watch I have too many" monsters inside me" episodes? Honestly it was like someone flipped a switch and the day after rads this started. Could be my keytruda also? Well nevertheless I hope it is on the mend whatever it is. Thanks for weighing in ladies.
Mel So glad puppy love is in your home🐶😍
irish What a rollercoaster ride it is for you lately. Hope your on the upside soon, fingers crossed.
Warn hello to all in the room, hope it's a quiet Saturday.
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dodger - a naturopathic doc told me to drink 1/2 lemon each morning (in water or tea) to rid system of parasites, etc. Maybe that would help. My BFF had h.pylori parasite due to well water she was drinking.
However, it seems like the timing with rads is "telling". Keep researching.
I firmly believe to "be your best advocate".
Will fill in dx soon. Love to you all.
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Irish, I was on Zoloft many years ago for PTSD from a car accident and I only lasted a week. I was a complete zombie, so I stopped it. Sounds like you may want to try something else instead.
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Good morning lovely ladies!
We're getting ready for whatever weather is heading our way in So Cal. By getting ready, I mean checking the weather channel from time to time.
My PCP filled out the paperwork for the DP parking placard. I'm going to walk into the DMV on Monday (hopefully) rather than mail it in. Hopefully I can get the placard sooner that way.
We're supposed to drive over the local mountains to see my dad in the desert today. DH has a truck so we should be OK. It should be a fun trip.
I'm still not awake. Kept moving between my bed and the den love seat last night compliments of the coughing. Coffee is my friend today.
Oh, and my PCP recommended Boost High Calorie drink. It's over 500 calories per serving. She said it saved her dad's life because he had lost so much weight and it was the only thing he's drink. She said the vanilla was good, but another flavor (I can't remember which one) was "gross." Then she went on to say that she never actually tasted the vanilla and apologized if it was gross, too. LOL. I ordered the vanilla from Amazon. We shall see… Up a pound yesterday, down a pound today.
Irish, I'm sorry about the Zoloft. I never took that, but I did take Prozac years ago. It made me SO tired in the beginning and then after a period of time (weeks?) I started to feel like "me" again. I sure extra wonkiness was exactly what you've been wanting to experience. Of course, when I reported the fatigue, I got the, "No one has ever reported that before" response.
I'll check in later. Love to all and stay safe if you are in the storm's path. It's hard to take this prediction seriously when we've never had anything like this before. But then, it seems like that's what people say when they're caught off guard with disasters.
Carol
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Sunshine, glad you are getting some good suggestions on high calorie drinks that sound like a fair bit of protein. I got by mostly on ensure chocolate though I split it along with the carnation cholate instant break. I am glad that although you are not gaining a ton, you are hanging on to your weight which is encouraging.
About to get dressed, order my uber to get my picture to ride normal bus free and get tickets for the actual paratransit. I was told by my wellness caller to make sure I get up when they open so I can be assured they come. When using for hospital, give 4 hours for Herceptin, unsure about doctor appointments, possibly 6 or 7 hours. Friday will only book for two hours. Can walk around the hospital halls until it would arrive to pick me up for the ride home. Guestimating the time needed will be interesting.
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I am now fully prepared for the paratransit, got my picture and some bus tickets. Probably will take advantage of free bus rides as well. Paratransit for more important things. We will see. Feeling encouraged though, so thankful I fell in my apartment so I gained access to extra serviced with PT, OT and the paratransit as well. The trip across the city was hella expensive but really was not feeling the bus as said earlier. Planning some mall walking tomorrow and possibly monday as well. Might as well build up my strength and prepare myself for winter.
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@illimae Thanks for the response and to all that read. I see there's a moderate risk of drug interation with gabapentin and Zoloft. Culprit?? Let's just say my mind is a scrambled egg. Anyone that can comment on a AD that worked with pain meds such as gaba?? This Zoloft iw suppose to clear the interpressure in my head and the severe tremors in hands and head. I'll try a bit longer??
Next question if you'all don't mind. What AI is the easiest anti-estrogen reducer to take?? You know when you have MS the brain struggles with hormone imbalance to begin with. The flurvescent shots were ok to begin with, now I'm wondering especially with increase in optical migraines with auras (2 to 3 times a week) and the sorta uncontrollable mental health worries. Is there a point that the shots can be spaced a bit more?? I'm so grateful to the meds for giving me such great regression, but the mental health concerns are a bit frightening to me and my DH.
Waving hi to all and in pockets for scans. @dodgersgirl I hope you can return home soon. I found a porta potty to help me tremendously.
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Irish - I never found an SSRI (Zoloft etc.) that agreed with me. I was either too tired or edgy. I have been on Wellbutrin (generic name bupropion) for years now. It's an SNRI so rather than the serotonin inhibition it blocks norepinephrine. You would want to check with your neuro or PCP to see how that works with MS, I'm not sure. It's worked well for me. When I first started it I did feel it gave me a little bit of a burst of energy/anxiety l but after a while my body adjusted and I do just fine. I take gabapentin at night for neuropathy and I have no interactions there. I hope they can find something that will work for you.
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I slept a lot, after getting home from getting my pass across the city. Slept a couple of hours on couch in afternoon, about 6 and then deciding that was not enough, went for another 2 in bed, well rested. Feeling stronger in my legs, managed 10 bridge pose, each held for 10 secs. Tried rolling on my side for out thigh, may just do those in bathroom and doing those exercises there. Still have ankle exercises as well. Want to go mall walking sometime this afternoon. Try out my free bus ride with the paratransit pass and picture which actually looks better than my health card. If it does work out free, take regular bus to malls to walk and paratransit as well, Using it for my upcoming echo. Doing laundry right now with some clothes I want to wear.
Not sure if I mentioned but the reason I have not had my MRI is because they are 2000 behind, not sure why that has happened but that explains why no one has got back to me. I can wait.
I may have said it before but meals will be more normal for me. I have found too many that I truly did not like and that is wasteful. This morning, I want to make a bean pizza, use some old elpaso seasoning diluted in water as the tomato sauce section, add some olives and melt shredded cheese over top, should taste good. Tummy was over the Herceptin digestive issues yesterday. The other option is to make an egg pizza, adding same ingredients otherwise, we will see.
In pockets for those who need it, hope all have a good day.
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hi ladies. Hoping you’re all having a good weekend!! It’s been a nice one. Hoping anyone dealing with the impending hurricane Hilary is safe and sound. Sending good thoughts. Hello Mara!
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Hello Mel, hoping you are having lots of fun with Theo.
I changed my mind and decided to cook up a swanson turkey pie. I added salt, some wheat bran and caesar salad dressing. I ate it that way as a teen, grossed older DB out but tasted good to me.
Planning mall around. Debated waiting til tomorrow and may still do that, we will see, if not gone by 2.today, I know I won't be going.
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Good morning living room!
Dodgers in your pocket waiting for step progress and you getting released. Sending support encouragement and hugs.
Emac taxol is really strong. How many infusions have you had so far? I made it through only one. Everyone counts and there’s usually dose reduction or another medicine. Pocket duty for you as you struggle through these se’s.
Irish I do t know what a better estrogen blocker would be for you. I take faslodex injections with ibrance. I hope you get the right combination and feel. Enter soon.
Mel Theo is adorable. Puppy 🐶 love and energy is filling your home.
Mara I hope you feel better after your treatment soon. That’s great that you have more options to get out with paratransit.
Everyone on the west coast I hope it’s not as bad as predicted. Stay safe. I know the news will show us the worst of the worst but I pray you all are ok and out of harms way.
Waving hello to all
Tanya
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Tanya, thank you. Going to try out the free ride today or tomorrow. Probably tomorrow since I am going to be on peak hours for the bus.
I did get a grab bar for the tub, fits on the edge of the tub. It should work well when I shower as I use a tub chair when I do, does not look like it will cause trouble for lifting out the washer and bucket I use for a hamper. Will try it today when I shower. I will be getting up early tomorrow, have to be early when booking rides with paratransit as they fill up quick. Booking for my echo on Friday.
Food will be mostly normal. Working through the freezer food first, I want to be able to keep frozen dessert in there. Not practical to buy a second freezer. Making hard boiled eggs, 2 of them, will open up a can of meat and let the eggs cool. Make a mix of mayo, ranch and caesar, may tsp each mixed together and combine it. Going to see if my grocery store closer by has the swanson skillet dishes as something different to eat.
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Good morning, all. We "survived" the hurricane. A friend on FB posted about the #hurriquakenado. Pretty accurate. A good amount of rain for us, but no flooding in our immediate area. My dad, in the Palm Springs area (La Quinta) also escaped significant damage. A few things blown over and around, but nothing broken or damaged.
I went to the DMV when they opened this morning. Walked past about 12 people in the "regular" line, got my number, was served and out of there in about 40 minutes. The woman helping me was having trouble filling out the form like it was her first time. Then her printer was working right. Anyway, we chatted, and I told her I hoped I wasn't being a pain. (My way of owning a problem that wasn't really mine.) It all worked out, and I have my placard. I thanked her and told her I hoped the rest of her Monday went smoothly.
DH and I are joking about driving around town and just parking in random DP spots just because we can.
Coughed a lot last night. Am trying Flonase to see if this is the result of postnasal drip. The acid reducers didn't help, so this is the next thing we're trying. Weight down again. I'm waiting for me delivery of the high calorie Boost drink. It was supposed to come today, but now Amazon says tomorrow. Oh well.
Waving hi to everyone.
Carol
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Hi all you lovely folks. Thanks for the response. I'll keep Wellbutrin written down and give this Zoloft a little more time.
It's good to hear all are safe and flooding minimal in your area. I actually felt a beautiful seabreeze today. First time in months that we aren't dealing with oppressive heat.
I called a mobile health program last night for burning in base of spine and concern of bladder/kidney. Sure enough another UTI, but she felt the spine burning/pain is spinal mets. What a wonderful service since I didn't have to dress and drag my body to Urgent care or worse, an ER. I knew I just didn't feel good, but couldn't pinpoint it. These folks were very professional and spent an hour examining and questioning. This county is made up of 25% retires, so I imagine that program will be successful. You might wish to check to see if such a program is available in your area. These folks accepted my Medicare Advantage Humana HMO.
Wishing everyone a very fine day.
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That's a pretty cool service there irishlove. And a whole hour?! Wow! Just the not having to drag yourself anywhere is worth it :)
Bleh, mixed scan results and am now referred to an orthopedic oncologist for his expert read before they do rads (or surgery if he thinks its the more effective option) on hip. Staying on Xeloda for now but this is a middling drug for me, its reduced my tumor markers somewhat and taken care of some spots, just not in the hip of course :P I knew they were going to be mixed results based on what I could feel so no biggie, but glad I have a plan to sort this hip out once and for all. I did have a much better commute this time using a different route/train and platforms with escalators which was good because my main line went down at one point and the station hall was a madhouse when I was headed home, so I just switched to the other line for a few stops then crossed right over the platform, no stairs or hassle.
Baking some bread tonight using the no knead method so we will see how that turns out and then researching potential short vacation to eastern France end of September between onc visit and next scan. If they go for hip rads then we will book otherwise I guess not.
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Tanya I am doing 12 cycles and have done 3 so far. I'm done the first week of November. I have considered quitting. I don't want to call it quits yet. So far I get my infusions on Thursdays and I feel lousy over the weekend before I feel better again. If it's working I will tolerate that for a few months. I turn 46 on the 26th and have my quarterly bone scan and CT chest/abdomen/pelvis on the 28th so I'm anxious to get those results.
This week I'm going in to get the mapping CT done for my brain mets. It's kind of funny. With the Taxol and the lymphangitic spread taking such center stage with side effects, the SRT for my brain mets hasn't really registered for me yet. I'm really grateful my RO thinks he can get them in one session. We are in full smoke season here so I am staying inside or going out with an N95. The Northern California fires and a few we have on the Oregon side have kept us hot, smoky and dry. We are hoping to get a little of the remnants of Hillary today and possibly tomorrow. I think most of it is heading further east towards Idaho though.
Sunshine99- I'm glad you have your card and that Hillary was not too bad on you. My aunt is in/on Coronado and she fared pretty well also.
Mara - glad to hear the paratransit and the bus may work to allow you some mall walking. That will be great in the winter.
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emac! You’re so young. Taxol better kick butt some more
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Carol, so happy to hear you did not receive damage from the storm. My San Diego heart was concerned!
Irishlove, great mobile service and that you got to take advantage of it. Boo for UTIs though…they are monsters!
Sondraf, sorry to hear of your mixed results. Sounds like such a battle. Hope you can find a good trip. Praying for you.
emac, you are too young for all this! Will pray for your brain and hip issues.
I have a CT/PET scan tomorrow. Trying to feel better after an infusion and Faslodex shots on Friday. We are all battling multiple things right now. Sending prayers.
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Just saw on the news that the fires in the Pacific NW are getting worse, particularly in the Spokane area. We have several members from that part of the US and hope you are all safe.
Emac, Happy early Birthday in case my medicated brain forgets on the 26th. Glad they can get the brain nets in one treatment.
Mara, so thrilled to hear about the transportation improvement.
Irish
Keep that mobile med group on speed dial. So glad you found them.
Sondraf
Sorry about the uncertainty regarding your hip. Fingers crossed for a quick solution both for pain relief and so you can go on your vacation. Don't know if you have a spot in mind in eastern France, but I loved Strasbourg.
Hugs to all
Eleanora
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DD and I were in Vancouver, BC over the weekend. There was a little bit of smoke there but Seattle was awful. DS lives in Oregon and says they are getting smoke from Spokane and it's very thick.
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