My Husband, My Life, My Love, My Family, My Cancer
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Elderberry - those green eyes are so mesmerizing. What amazing peepers!
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Irish look on Amazon. I did a quick search and some items came up. I hope you find what you need !
My mouth is slightly better. Slightly I appreciate someone asking. Days are rough when you’re not able to eat. But what else can I do. Except keep working with palliative care. Hugs to all loving the kitty cat pics. Beautiful cat! Loved the squirrel Mara lol1 -
Wow. It's been a long time since I posted. Losing Kitty greatly saddened me. Worry about Sadiesservant. So many struggling right now. I've been hanging around in pockets and sending positive thoughts to those in need.
Emac, I hope the Taxol kicks butt, and I would also simultaneously seek a second opinion.
Sunshine, I'm sorry for your nightly coughing fits. Hopefully, your whopping .2 pounds is just the beginning as you find more foods that you can manage.
Mel - I'm glad your mouth is feeling a little better.
Sondra, Runor, and others with husbands having medical issues. I hate that you're having the extra stress and worry. I agree with whoever said enough is enough!
Runor, your tarot story had me laughing. We've missed you!
Hurray for Mae! I love hearing the positive news!
Mara - it sounds like you're getting the help you need, and the extra ride service(?) sounds like it will be a Godsend. The squirrel was a cutie. I've almost stopped buying milk. I like nonfat milk, but I can't drink too much with Verzenio issues, and it just goes bad. Sometimes I make pudding, and I've thought of freezing it to make it last longer. I buy shelf-stable milk and powdered milk to keep on hand for things that really just need milk.
As Elderberry commented, this thread really has exploded, which is a good thing, but hard to keep up. (Good to see you Elderberry!)
I know there are so many more that I'd like to comment directly. I expect to have a little more "house" time for a little while, so maybe I'll be able to keep up.
Our family cruise was tons of fun for everyone. The kids all swam with the dolphins in Costa Maya, and did their own excursions in Cozumel - scuba diving for one, and exploring ruins for the others. My grandson loved the excursions, and - in true male fashion - the dining room and buffet on the ship. Lol. I had one great hand in the casino that was especially fun (AAA/A for any of you that play 3 card poker).
DH had his first knee replacement today. Everything went well. And I survived driving back from Ft Worth (dh does most of the driving these days). Now, we just have recuperation/rehab to get through - thus the extra house time.
You ladies are all very special to me. I'm wishing for a calm evening and pleasant tomorrow for you all.
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Hi seeq
Good to hear from you. Hope your husband's knee recovery goes well. Had a right hip replacement in 2019 and it's one of the best decisions I've made.
Your cruise sounds amazing. Isn't it wonderful to watch the grandkids have fun? Mine are too young for cruising, but I rented a large beach house for a week and everyone came, and it was crowded and noisy and wonderful. I had a great time with them.
I hope everyone stays indoors and cool as much as possible this week with it's predicted high temperatures. Does anyone else feel as though their tx makes them more sensitive to heat?
Hugs,
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Tanya Good to see ya, hope you're doing well. How adorable are those kittens hope you find good homes for them.
Emac I think Taxol is a butt kicker in more ways than one and will get this under control for you. Continued prayers.
Elderberry Aelfric was a handsome guy for sure! It's hard when we loose our little buddies they bring so much joy and comfort. We lost our Lab Misty at the end of my first treatment in 2017 and I swear she was hanging on for me.
Irish Ugh lymphadema now, fingers crossed in time the massage and bra help. Yep Amazon usually has it all.
seeq Sounds like it was a fabulous trip glad you squeezed it in before DH surgery. Wishing him a smooth recovery.
Eleanora Agree I do feel like I am more heat sensitive on therapy. I try to flip flop from sun to shade when we are boating or on the beach. I definitely can tell when it's time for me to shelter in the shade.
We had a great time at the wedding on Saturday was a beautiful day with no humidity. My daughter is back and living at the Jersey shore! We are all so happy and their rental is beach block, you can see the ocean from the porch. We went over Sunday to help her and her boyfriend get settled was a great day.
Starting radiation today, will be easier this time around . Only 4 quick shots SBRT to knock back lung met. Looking forward to killing off this little sucker that continues to grow.
Hi to all and sending positive vibes and strength to everyone.
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I definitely cannot handle the heat. Used to love it.
SeeQ~good to see you. Sending hugs
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Carol, though it is not much, I am happy to hear you gained a little big, in the right direction.
Tanya I have a polydactyl boy as well, not sure how lucky I am except for the love he has for me.
Living, Aelfric is handsome for sure. I love my two kitties as well, they are never far away from me as well.
Emac, hoping the taxol will improve the lung situation for you, in your pocket.
Seeq, I have not get the extra ride but the PT I do plus the OT visits, have two more I think and the extra at home nurse visit and the extra call on Friday is fine. Waiting for the paratransit go ahead. Also decided that since the MRI is not happening, will wait until normal scan time.
Mel, I cannot take it either. We have not had a bad summer but when it wants to be hot, humid goes with it starting from tomorrow.
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Boring breakfast, 3eggs and shredded cheese, prepared in the sandwich maker, added tiny bit of mayo and salt. Egg comes out like the Mecdonalds egg mcmuffin which I like. No english muffin yet. It tasted good but was not good. As far as t he milk thing goes, I'll drink a quarter cup at a time a couple times a day, should make it easier to take instead of tossing it.
Found another couple ways to use up laundry and bar soap. I have a ton of old bar soap and I only use foaming so put hot water in plastic container and use it to fill foam handsoap, as well as dishsoap containers to dish soap detergent last longer as well. Doing the same with unused laundry bar soap. Just pour it in as an addin to regular bit of detergent in the laundry. Both work well and better than just adding water. The bar soaps last a long time as well. Also gives me extra use of plastic containers as well. Cannot keep too many as my apartment is teeny but I can keep some from going to recycling place. I also buy spray bottles with a good nozzle and keep them after they are used up.
PT, chores and money making is the order of the day. I am going to possibly start walk outside again with cane, build up for the heat as paratransit is not set up yet. I will say I really am itching to put myself on the floor to get up but OT said not to so am listening. Best exercise which I do in bed is the one where you lift your pelvis. Really does work you glutes and core. Can only manage 10 but it feels good, looking up yoga in bed as well.
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Irish- Amoena has a website also that has everything, (Amoena.com) I have ordered many products directly from them. I did a quick search re lymphedema products and they listed several bras- not sure if they are what you are looking for. I have called them to talk about fit and they were very helpful.
Also- if your insurance pays for any of their products they may have a source where you can try things on- these places usually have a limited parts of the product line though.
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You ladies all have the best way of brightening my day!
Elderberry, the “woo-woo” comment made me laugh! It sounds like you live in a delightful area. I feel for you missing your sweet cat. You keep thinking you hear them or that you catch a glimpse of them out of the corner of your eye…
Tanya, nice to see you here again. Cute kitten!
Livingivlife, OMG! The skunk incident two days before you left for your daughter’s wedding??? Glad your dress was safe.
Irish, I think I bought some Amoena bras on Amazon. I don’t think it’s the compression type, but it might be worth a look there.
Emac, oh, I don’t even know what to say. I’m so sorry…
Mel, I’m glad your mouth is starting to feel better, albeit slightly.
Seeq, nice to see you back in the living room.
Waving hi to Eleanora, cookie, mara, nkb, and all the many others I’ve missed.
I saw my MO yesterday and DH was part of the conversation. Basically, she doesn’t think any of my issues are related to breast cancer and suggested I take Prilosec (of the generic) for 14 days to see if that help with the coughing (in case it’s related to reflux.) She didn’t really comment on the weight loss, but I haven’t read her after-visit notes yet.
I sort of felt a little bit brushed off, which has never happened with her before. DH thought she seemed preoccupied. I took the Prilosec this morning and will resume the Ibrance tomorrow. I have a dentist appointment today and didn’t want to risk having spasms and vomiting. I had another rough night last night although it started off with no coughing until around 1 or 2 am.
My weight was up another .2 pounds today, so that’s good. DH messaged my PCP doc to express his concerns and to see if she can see me earlier. She messaged back to send him his message through MY patient portal (rather than his), which we did. I also made a note that I gave her permission to talk with him about my medical details.
Motility study of esophagus is scheduled for September 11. I will keep trying to get an earlier appointment. The GI nurse said to keep trying – she used the “squeaky wheel” example. One funny thing was that when I was talking to the scheduler, she said it was for an “anal motility study.” I told her it was esophageal, and we laughed about the “other end” mix-up. Fortunately, the prep instructions they sent me DID say, “esophageal.” LOL
That’s about it for now. I’m still waking up, so forgive any omissions or typos. I’m writing this in Word and will copy and paste it into the comments section here.
Carol
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Cookie54
So awesome that you have your daughter nearby. Really happy for you.
I had SBRT last year to the pelvis and a skull bone. The radiation itself was easy - peasy. The skull radiation causes some swelling that requires a short course of steroids, but you should have no problem with the lung.
In your pocket for great results.
Go blast that sucker!
Eleanora
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Eleanora Thanks for the insight, appreciate it❤️
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Hi everyone. Hope the day is cooling down and you can enjoy yourself. Thanks everyone for ideas on amoena compression type garments. You probably have never met someone that has never ordered anything on line, well I'm that one person. I go out so seldom that I enjoy shopping for specific items in person. Guess I'm old fashioned. Went to Kohls and found a specialty sports bra that has wider straps, front and back and side panels also wider, drops like a longer camiesole, has the right type of pressure needed and I can get it over my head. It's not exactly an Amoena, but I think it'll work and it's the same price.
My balance is off and I'm overly sensitive to sounds, lights, too many people, heat, etc., right now. So today is my 2nd trip out of the house since being hospitalized for MS attack two weeks ago. I made it, but the restaurant overwhelmed me (loud music and people and the traffic). Happy to be home in my fav chair.
@sunshine99 Well sure glad they didn't have you fill an rx for colonoscopy prep. lol. Keep up the good work of gaining some weight! I take protonix daily and sometimes that isn't enough. Lemonaide (acidic) drinks really caused problems, so now I only drink small amounts before dinner. I do fasting, not eating after 6 p.m. until 10 a.m. Hope your study gets you some good answers.
@cookie54 Hope the rads go smooth for you. Hope you get great results gal.
@emac877 I posted on your thread re: info on a drug used for treating LC in lung cancer. Hope it gives you some good information that is helpful.
@mara51506 Gosh you stay so busy I don't know how you do it. Stay safe and cool.
@nkb Thank you so much for all the info. I can't get Humana to approve anything out of the ordinary. I'm gonna try this sports bra and see. There is a specialty shop in St. Augustine that carries mastectomy products. The draw back is, it's hit or miss and if you call they just say yes we carry different products to help you. Of course a sweet trip to St. Augustine is never wasted anyway!
@micmel Good to hear you are making some headway with your mouth sores. They are just awful and so darn hard to get rid of. I hope your sweet friend is doing better and I'm so glad you are in her corner to support her.
Waving to all you ladies I wish I could address individually. But you know I'm sending love and hugs and good vibes your way.
Laurel
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Irishlove - I have a friend whom I think is the "other person" who has never bought anything online. She also just got her first smartphone this past spring. I buy a lot online in large part because so many of the stores in my area (especially department stores) have closed and I'd have to drive quite a ways to other malls, etc. that have those stores. Our downtown has very little in the way of retail shopping anymore too. I actually miss shopping for things, especially clothes, in person. There's so much more to the experience than just "buying something". There's nothing like a good old fashioned downtown department store.
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@emac877 — when I am home, I use a home oxy concentrator. It has the bubbler attachment and runs oxygen “constantly”. My portable oxygen concentrator doesn’t have the option to humidify the air and the oxygen is pushed in “pulses” instead of a steady flow. For me, when I use the portable unit, my nose dries out plus I feel like I get my oxygen from the home unit.
I don’t know if it is the same for everyone though.
I hope you can get the concentrator to keep your SpO2 levels up.
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Irish, I fast, too. I've expanded my eating window from around 10 am to 5 pm. Used to be around four hours, but I'm using the extra time to eat more. I try to finish eating early enough that I can minimize reflux.
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Laurel, I am being cautious. It's too hot for me outside. Taking UBER to and from. Little wobbly myself. No falls though. Planning to ask for cheese and ginger ale when I get in for Herceptin.
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Off to education for Taxol soon and from there the port placement. Not sure if I'm nervous or just tired. I feel a little overwhelmed this morning although I remember the port placement not being a huge deal last time. Looks like the weekly Taxol group hasn't been active for a while.
@dodgersgirl I need to contact the company. I didn't get great instructions with this. I was just sort of handed a bag of stuff and told to read the manual. There is a card clipped to the bag and I have been so preoccupied trying to get this Piqray supply that I have not pursued a home concentrator. That's my next project after I get the meds and disability going.
Thank you all for the support and suggestions. I am looking into a second opinion. My hesitation in that is that I am in a rural area with one cancer center so I hesitate to burn bridges or make anything awkward. I think I will just be up front with my MO. By chance does anyone have a recommendation at Stanford? OHSU in Portland is no longer taking second opinion requests so Stanford would be my next closest travel destination.
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@Emac877- what about UCSF? It would probably be hard to get an appointment with Hope Rugo, but, there are many other doctors there as well.
Irish- interesting long article in the New Yorker about MS- read it while getting chemo - very informative and seemed upbeat. Featuring Dr Sadiq of the Tisch Multiple Sclerosis Research Center in New York.
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Jaut checking in but Sunday i had to go to the emergency room for shortness of breath and chest pain and I apparently rocked a massive pulmonary embolism. Same hospital that misdiagnosed hubs (hes absolutely fine by the way) stuck me on a resus unit overnight before moving me to an acute assessment ward with various inhabitants with late stages of dementia. Its been...an experience. I'm hoping to get out tomorrow but will be on blood thinner drugs for at least 3 months. Mom is going to fly in when hubs flies out to Sweden so no vacation still. God I need a break, we all do.
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Sandra, I am sorry about your hospital stay and resus. Hope you get out soon.
My Herceptin was fine, took an UBER there. Ate some snacks and felt cocky so I walked part of the way home, overheated and legs felt super weak. Phoned an UBER only to find I could not get in, was a high step and leg wanted no part of it. I had to get horizontal or would pass out so this poor guy is stuck with me. He wanted to leave me there but I called an ambulance. Vitals were fine, left against advice as Herceptin plus the heat of being in the car with no AC left me without energy to stay. I believe fully with was heat related as when older DB picked me me up, I was able to get in his van. Going forward, no walking, even to a bus stop. Deliveries only for groceries and rest. SIL was annoyed I tried to walk home, I told I felt bad. They were pissed I was exhausted to stay but ER would have been 10 hours just to clear the hallway. More time to see the doctor. No more activities in the heat period. I have OT tomorrow. SIL thinks I need a home but I don't want to live with other people and don't feel it is necessary at this stage. Just hate my body and will phone the RO. Pissed off but was able get home.
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Sondra-When will it stop? Sorry you are going through all of this. Glad your mom can come out to be with you for a bit.
Mara-It was brutal outside today in Chicago-probably the same for you in London. Hope you can get that transit benefit lined up soon so you are not tempted to push too hard.
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Oh Sondra what hell you've been through! Sleeping in a hospital is never easy, but hope they can give you something to help. Glad to hear your DH is fine. Now the focus can be on getting you back on your feet. Wonderful that your mom can come to stay with you.
Mara
The weather is scary. I did a quick grocery run this afternoon and needed cold towels when I got back to the house. Please stay home for the next few days.
None of us want to give up independent living, but it seems as though you need more help than you have, at least temporarily.
Are there any other social services available for you? Over 25 years ago I was a "friendly visitor". The program was run through the visiting nurse association and I was assigned to an older woman who lived alone, did not drive and had no family to help. I would visit twice a week for several hours and take care of whatever she needed or wanted - grocery shopping, library visits - I even drove her to the hospital once and checked her in for a minor surgical procedure. When my Dad was alone after Mom died, I was able to find something similar for him.
Hugs to you both
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Eleonora, I do have a visiting nurse as well as an occupational therapist coming tomorrow. I also have a volunteer who calls to make sure I am well, if I don't pick up, they call my DB and SIL. That has only happened when I forgot to turn my phone on a couple of times. I just need to give up the walking for now, at least outside and if I need bus, train my legs first but inside and later, not during these hot days, walk up and down the driveway to get used to it. I obviously cannot handle it anymore.
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Good evening ladies. Hope everyone is improving or doing well today. I think of everything everyone is going through a lot. I know we are a strong bunch I’m hoping the second part of the year for us all is filled with smooth sailing waters.
I’ve been trying to find a dog since I’ve decided I’m ready for another one two years four months after my precious Deeohgee and tag passed away. I want to rescue one. I’ve been researching them. I finally found one that I applied to get her. Her name is Rain.
I hope it all works out and I’ll get my little girl! I’ve missed my Deeohgee and tag. I loved the companionship. Hugs and good days to all.
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@micmel — awwww Good luck with Rain. I miss my daughter’s dog. He passed the weekend I was first diagnosed. Hope you get a new puppy soon. Can’t wait to see pics!
@mara51506 - I have a leg lift strap in my car as I can’t get my left leg into a car on my own anymore. It’s compact and could fit in a purse. Might be helpful for you, too. I got mine from Amazon:
RMS 35 inch long leg lifter. Durable and Ridgid hand strap and foot loop.
It can be used to get a leg up into bed or scan beds etc For the car, I sit on the side of the car seat and place my foot in the loop (think a horse saddle loop) Then using my arms and the loops on the strap, I lift my leg into the car. Works really well
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Good evening everyone. Heat index well over friggin hell hot. Went out today again for lunch and exchange items. By the time we got to the restaurant I was ready to come home. Here's the thing we don't think about. Your body heats up rapidly and even if you hit the a.c. on high in the car, it takes time to cool it back down. The restaurant a.c.'s are running full force and struggling to cool the area. The more people in the restaurant obviously the less cooling. We grabbed lunch and I exchanged the compression garment for a larger size. I hate the cost of $45 for one garment, but I bucked up and bought two. They are attractive. It looks like a crop top, with built in shelf bras, not quite a cami length but long enough to do the job. Tomorrow absolutely no going out that door.
@micmel Oh I love that pup and that name. That pup will have a great life if the planets align. Fingers crossed and I'll send a word to St. Francis, too.
@mara51506 I don't think even the youngest and fittest can handle this oppressive heat wave. Don't push yourself to try to prove you can do it. Stay in, stay cool and let someone else take care of your needs.
@emac877 In your pocket for treatment plans and success… I didn't seek a 2nd opinion but I doubt that any truly compassionate MO would or should object. In your situation and you sound a bit unsure, I'd get that 2nd so you could feel comfortable that you had info from both parties to make the best decision possible.
@sondraf Oh my gosh what in the world. Any idea what cause the pulmonary embolism? I remember reading somewhere here on this forum that cancer blood is actually thicker then non-cancerous and of course wonder about meds. Someone posed the question whether we should be on at mimimum, baby aspirin. I could not find an answer to that question and put it in my notes to ask MO next visit. Must feel like freaking twilight zone in the hospital and with roommates with dementia. How can they justify that room arrangement? How frightening to begin with. I pray you heal and quickly and get home asap.
@sunshine99 How are you doing today?? Are you able to keep food down a bit better? I think most fasting schedules allow for 8 hour time frames, but I don't eat breakfast, with exception of maybe yogurt.
@nkb Thanks for the heads up on New Yorker article. I'll track that down.
Waving to all and please stay safe.
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Yikes! I’ve not been on this forum for several days and just reading through all of everyone’s posts. It was a busy weekend for me and DH, then Monday I saw my Onc, went over my Sacral MRI, no changes. When I saw him I confided that it’s really finally hit me that I have Stage IV bone Mets, and how long till it. Spreads quietly to liver or brain or lung Mets. I was feelin down and fearful of my prgognosis and asked him questions about my lIquid biopsy and what did it’s show….. He looked at me and said don’t let all of this stay in your head you are doing fine and Im taking care of you.then He said I want You to come in for a Bone, Pet/CT Scan next week and we’ll see what the cancer looks like. Then his Phys Assistant came put to me and knelt down beside me and looked me in the eye and said, BARB DON’T ALLOW YOURSELF TO WORRY ABOUT BRAIN METS AND OTHER PROGRESSION. YOU WILL BE FINE BECAUSE THE TREATMENTS YOU ARE ON WERE NOT AROUND BEFORE 2017. THESE NEW MEDICATIONS ARE GIVING YEARS TO BREAST CANCER PATIENTS. YOU WILL HAVE YEARS…… I SAID YEAH. BUT I’M 74 HOW MANY YEARS COULD I SURVIVE ON THESE MEDS. SHE AND MY ONC SAID YOU ARE YOUNG AND YOU WILL OUTLIVE THIS METS THING WITH ALL THE TREATMENTS COMING OUT. WE ARE TAKING CARE OF YOU SO STOP WORRYING,WE GOT THIS……ANYWAY I LOVE MY ONCOLOGIST AND CHRISSY HIS PA. I FELT BETTER WHEN I LEFT HIS OFFICE, AND THEN WENT AND GOTN MY 3 INECTIONS…Tuesday was boring, and uneventful. Today I had a follow up with my Pain Management Neurologist went over my MRI for my neck cervical Stenosis, and I’m clear for an injection at the SURGICENTER.. so I’m eagerly waiting for this procedure with him because it helps stop the pain and numbness in my fingers, and headaches in the morning. When In wake up. So that is my last few days and update.
I am thinking of all of you. I’m happy for the good news and in your pockets and feeling those struggling. You are all in my prayers every day on my mind.Some of your comments stuck out in my mind.
@mavericksmom I was so glad you stopped in. I t was nice to see you. @irishlove you and your DH are in. My heart.💗 @cookie54 I appreciate your struggles with this beast also. @micmel I’m so happy you are going to be welcoming a rescue dog into your home. I have worked with rescues and always hav pictures of orphans in need on my facebook. They are also looking for people to foster too.🖤🐾 @illimae I was so happy to read your good news, and Im in your pocket also. @mara51506 sending you virtual hugs girl💗and also wishing all of you wonderful women and men a restful night. Good night everyone.💙
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@shanagirl Oh thank you so much for sharing your wonderful team and your experience. I tell you they are worth their weight in gold. And your sharing makes me smile that there are truly compassionate medical folks in this world. I know most are, but some are burned out. You have an extraordinary team. Oh by the way 74 is still a baby, coming from a 67 yr. old. lol
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SondraF- I'm so sorry you ended up in the hospital and in less than great accommodations. How did you end up with the dementia patients? The one person I know that had a pulmonary embolism said she'd never been in so much pain; she thought she was having a heart attack and was going to die. I'm glad you're home, that you're hubby is just fine, and that your mom is coming to hang out with you when hubby is away.
Mara - I think it's good you decided no more walking in the heat. That was scary to read. The Uber driver really just wanted to leave you there in ? Did I understand that right? If so, what a sh!t!
Mel - Rain is adorable, I hope your application gets approved.
Shanagirl - it sounds like your MO and his PA are caring and compassionate. It's so nice they took the time to really reassure you, and weren't at all dismissive.
I ran errands today - mostly to restock the house with groceries after traveling. DH is not ready for that kind of outing, so I went alone. I enjoyed having time to browse for a change. I made an easy dump and bake pasta and meatballs casserole for dinner. Lots of it left, so it will be dinner tomorrow, too. 🙂
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