My Husband, My Life, My Love, My Family, My Cancer
Comments
-
I spoke with the PA and he reviewed the CT with my oncologist. They are not super concerned as of yet. They want to rescan in 2 months and see if it has grown. I'm on an inhaled steroid (Advair) and a week of Amoxicillin. Hopefully that will help with the wheezing and shortness of breath. He did not rule out the possibility of progression but the fact that they are not super concerned right now is reassuring. Thank you for the pocket duty.
0 -
yesterday was dangerous air quality levels. Today was a deracho with 79.9 mph winds. Possibly localized tornadoes, too. LOTS of lines down and trees down. Nearly 49% of city is without power.
Running oxygen on my portable Inogene-like machine. Running on the spare battery. Hoping my large home battery back up machine will keep me breathing. Even Generac machines may not run my home unit with the humidifier for more than a couple of hours. They really draw power. DH uses a BiPap which means he will have to sleep upright in his recliner tonight. Not sure if power will be able to be restored tomorrow. Damage path is massive. Hoping inside house stays cool but tomorrow’s heat index is supposed to be 100+.
Thinking about seeing how far away available motel rooms are.
0 -
Emac - I don't get on the site nearly as much as I used to, so just saw your recent posts here and want to wish you all the best! Get well soon!
0 -
hello ladies!
Thank you for all of your warmth! I have really needed it! A very good friend sent me a beautiful gift today. Everything a girl could want to pamper herself! In a lovely lavender scent! ( my favorite ) it all came in a nice bag that I can take to my infusions. It is so nice to be made to feel special!!I did find out that I will be doing taxatore and gemzar. I will be getting the infusion every three weeks. I am really dreading the hair loss. I shouldn’t be vain. But I will look terrible without my hair. Ugh!! I need to get over myself!
The sticky notes are a great idea! I can never remember everyone. But I can promise you that I am praying for us all!!
thank you for sending me some hope as a TNMBC!! My cancer morphed into TN. I was hormone positive for eight years.Is there light at the end of the chemo tunnel? Will I be jumping into the chemo chair for the rest of this journey? Or are there tx that will allow me to grow my hair back? So many questions!!
Love and hugs to everyone!
I will grab the sticky notes at the store. So I can start properly responding to everyone!Love and hugs all around
1 -
@chelleg - Taxotere every 3 weeks is the IV Chemo treatment I am on. If you are interested, I started a thread describing side effects. Last week was my 8th treatment and scans are showing cancer shrinking not just being stable. So, I will do Treatments 9 and 10 and then scan again (providing blood work holds strong)
Hope you find positive results, too
1 -
@emac877 In your pocket for tomorrow. I hope it's pneumonia as scans aren't always good at discerning things. Praying for you that there is no progression….
@seeq Hello to you. This thread is great, so anxious to check in every evening and catch up on daily happenings.
@shanagirl Darn I hate that you were wide awake and didn't find someone to chat with. I'm awake every two hours it seems to go to the bathroom. If I turn the tv on or computer on, I stay awake all night and get into a bad routine of sleeping day
@kittykat If I recall you are in Australia?? I had a friend from an MS forum that lived in Australia and she remarked how the government was progressive in funding for handicapped accessible vehicles and of housing renovations. It's so good to know they will help to get you home. We all know there is no place like home. Praying for you.
Waving to everyone and wishing for nothing but goodness in your lives.
I did it, I finally truly swam. Last dip was cold and short, this time I felt a bit stronger. Still stayed in the shallow end. DH joined me. We are both on edge about his visit to the MO tomorrow for the results on his biopsy. We know he has CLL, it's just how far along it is and does he need to start meds.
Tomorrow is chimichunga day at our favorite restaurant of over 40 years. So we'll stop to for lunch. We don't go out to eat much lately as money is tight supporting DD and DGD, who live with us. It appears they are getting closer to a monetary settlement (bad car accident in which Son In Law was injured) and they will finally put their family back together again. I will miss having a 9 yr. old in the house. We watch Donald Duck together when Nanny feels like poop. When I was a kid living with Grandmother, we watched Lawrence Welk together. Ah memories.
1 -
dodgers~my goodness, thank god you weren’t hurt. Sounds like quite the storm. I wouldn’t be ok without ac and cool air. I breathe on one lung. Humidity gets me good. Can’t function good at all. Hope you get power back soon
0 -
emac Glad you felt reassurance from your doctor to give you some peace of mind. Nothing has been determined and I take that as a win right now.
chellag All these changes are tough so we totally understand. It was a big adjustment for me also not having hair. I found really cute hats and head scarves you'll see what works for you. I made it through and eventually embraced every part of it growing back. I literally would give myself pep talks in the mirror and say out loud "your life is more important than you hair". It helped me remind myself that I was more than just my physical appearance. I did take biotin after chemo not sure if it really helped or not. A friend of mine used rosemary oil..who knows….We're all here for you with each step,hugs.
irish In your pocket for DH results, enjoy your lunch.
dodgersgirl Hope your able to stay fairly cool today, gosh mother nature really went on a rampage!
Hoping air quality improves here today. We having been laying low at home, hoping to get outside this weekend!
Hi to all, always thinking and praying for everyone. Still think of Sadie daily hoping we hear something🤞
0 -
Living, you definitely want to take care in this heat and smog from the fires in Quebec. We are supposed to get some rain though and that may help. Congratuations to your daughter and your family on the wedding.
Emac, glad they are not in such a rush for scanning but I will be in your pocket for the future scan and hoping the steroids help the wheezing.
Dodgersgirl, I hope you did not lose power and hoping the backups were helpful to keep you breathing. In your pocket.
Irishlove, glad you were able to get out swimming. Good for you.
Kitty in your pocket as always hoping you get home soon.
Mel, nice to see you again.
I miss Sadie's servant as well, in her pocket as well.
I will say, I love keeping up on the sticky notes and pasting them in as I don't miss nearly as many people.
0 -
Unsure what I want to do today, wanting to go outside for a walk or two. Not staying out too long, smoggy here so no more than 20 mins at a time. Still have PT to do and training to get back on treadmill, I hang onto the handles so big thing is take my time. Also want to work harder on games and surveys. Bills were higher than I liked. Already set up rent, my phone/internet and other monthly bills. Planning to try to maintain paying for groceries a little at a time with those survey gains. I do have money in the bank, just prefer to live off my basic funds.
Planning some sort of egg meal with canned chicken, share that with my cats by mixing up their wet food. Bean meal will also feature heavily along with spinach and soup noodles as well.
Hope as many of you have a long day and pleasant night as possible. Still in your pockets.
0 -
Wow has this living room become busy! I’m going to have to get a notebook just to keep track of everyone. Here for pocket duty if needed. Got my SI joint injections today instead of 8/18 when a cancellation opened up a space. I’m praying this will help my severe back pain. Can finally see some blue sky - we have had horrible haze from the Canadian fires since Tuesday. But with it comes heat. Thank God for A/C.
Thinking of everyone, especially those struggling, dealing with new dx or progression. This is a good place to be, where you can cry and complain. We will bring comfort when there’s bad news and dance for joy when there’s good news. Hugs to all….0 -
I am feeling better today after being on the steroids and a full day of antibiotics. I'm not quite as tired.
Dodgersgirl - how scary! Wishing you speedy return of power and praying for your safety.
Irishlove - glad to year you enjoyed your swim. I need to get back in the pool myself, that sounds amazing. I'm also happy for your DD and that their family is being put back together.
Thinking of all of you in these crazy weather patterns. I hope that you are safe and staying cool. We are warm here, high 90's and possibly 102 for the 4th of July but nothing like Texas and the southwest. I think the major fear right now is fires as it is dry and hot. Wishing everyone a good day.
0 -
Wow, so much to catch up on here.
I'm sorry for those going through air quality issues. That has to be hard. And to lose power when you need oxygen is horrible.
I had my brain EEG yesterday. Can't understand the report except for "no seizure activity." I'll take it.
Endoscopy scheduled for next Wednesday at the end of the day.
Am having trouble typing on my laptop. Will probably just lurk for a while…
Carol
0 -
@sunshine99 Wonderful news on your EEG. It's a fear I suspect well all have.
@dodgersgirl Hope they get that power back on quickly! Did you have to find a motel room? I saw the weather hitting Illinois and Colorado pretty hard. It's a strange tornado season.
Hi everyone. Thinking and praying for everyone and family, too. So glad to see new memories being made.
Saw DH's MO today and the news is kinda mixed. He does not have CLL. He has non-hodgkin's lymphoma. Good news is it's slow growing. He is not my MO, but knows that I am stage 4. He suggests that we wait to start treatment and recheck labs every 2 months. He left the decision up to my DH, who is not showing any symptoms at this point. MO said younger people usually want to start treatment early in the disease process and older folks prefer to wait. DH said NO thanks and left very quickly. So we wait.
0 -
Mara-How did things go with the Care Coordinator yesterday?
Relieved that the air quality in Chicago has improved. The past few days were rough. Hope the fires in Canada are subsiding.
0 -
My thanks to all for your help. She has been diagnosed stage 4, the tx regimen has changed to palliative and surgery is not part of the plan right now. She has a fairly large breast tumour, Mets in the lymph nodes and 2 spots in the liver. We are all reeling.
0 -
Molliefish,
Sorry to hear about your friend-I can imagine that you are all reeling. If you think it appropriate, encourage her to seek a second opinion on treatment plans. As Micmel noted, she had breast surgery and liver resectioning with a similar diagnosis and has been NEAD for years. That might be a good idea for your friend. I did not have my fairly large breast tumour removed, but it shrunk considerably with treatment by pills. It is so hard to make sense of all of this at first. A second opinion might give her more confidence and understanding of the treatment plan.
0 -
@sf-cakes PM me if you have London questions for your trip - Im not very knowledgeable about theatre but I do know about where to eat, see, and what to avoid :)
My parents are headed home to WI today from visiting with my brothers family in NV - looks like they will be behind that big weather front and above the storms below I-80. They've done this trip a thousand times and have it completely dialled in, but I worry a bit more every year of two 75 year olds bombing down the highway for three days.
0 -
Irishlove
Glad to hear that your husband's lymphoma is slow growing. Sounds like he has a good MO.
Dodgersgirl
Hope the weather has improved and your power supply is back. In the small town where I lived anyone with life-saving equipment dependent on electricity could register with the fire department/emergency services and when the power went down a vehicle with emergency power would show up. Might that be available where you live?
Molliefish
So sorry about your friend. I also think a second opinion would be useful.
Emac
Glad to hear your good news. Hope things stay stable.
Mara
I love reading your reports of how you spend each day and admire your determination to do as much as possible. Hope the care coordinator has been helpful.
Mel, Cookie, Shana and everyone on the east coast - there are storms predicted for this weekend that should wash some of the smoke from the air and give us at least a temporary improvement in breathing.
0 -
Good Morning, well the smoke has definitely thrown a wrench in the weekend plans here. Hoping to squeak in a day or two outdoors. Can't even imagine how bad it has been for the Canadians, hope there is an end in sight!
irish Sorry to hear DH has NHL but glad it's a slow grower . Gosh you guys need a break!
Molliefish Agree a second opinion is the way I would go and advise. At least there are no questions at the end of the day as to what may have been.
sondraf Ugh yes all these storms around, hopefully they will take their time and stop or even stay over somewhere.
Carol Ok, good news on the EEG crossing fingers for Endo hoping they find a non-serious cause and a easy fix!
dodgers Hope power has been restored and you guys are hanging in there.
Hi to all hope it's a day filled with something positive!
0 -
Goldens, I use sticky notes on the computer to try and keep up with everyone. I love that we have so many people who are here with us. The haze was terrible.
Emac, I am glad you are feeling better after the antibiotics.
Sunshine, I am glad no seizure activity but sorry about the trouble typing.
Irishlove, I am glad your husband has the option to wait for treatment and that the lymphoma is slow growing.
Chicagoan, that will be this Thursday this week. I am hoping for some information on getting into a physio class with someone that sees me getting off floor and back up.
Molliefish, I am sorry to hear about your friend as well, second opinions are good to have at times.
Sondra F, in your parent's pockets for such a long trip.
Dodgersgirl, I hope your weather is better.
Eleanora, we don't have a smog advisory today after some thunderstorms last night which is good.
Cookie, perhaps some rain will clear it out for you and still allow for some plans for you.
0 -
Doing laundry presently and then making an egg mcmuffin. I have not liked the english muffins that come out of the sandwich maker so will make eggs and chicken separate in the sandwich maker and toast the english muffin in the convection oven. Probably put some butter on before toasting so it melts nicely. May also add some canned chicken to the egg portion, it would hold it together nicely and not be so messy to eat, put some mayo on the english muffin, should be good. Debating a hash brown or a couple onion rings. Later meals will include beans and small amounts of spinach. I really don't like spinach but want the extra iron it gives me. Small amounts through meals make it almost unnoiticable.
Planning to walk outside today, sunscreen and sunglasses will help and might do it more than once today. Cannot stay home. No mall walking as people will be out in droves as stores are closed Monday for Canada day. Taking the day off surveys and just playing mobile games for cash in between times. Sometimes over the weekend will be another bathtub blanket wash as well.
Edited to add that the egg mcmuffin was super filling, I did butter and mayo the toasted english muffin, two eggs with some chicken, came out very nice tasting though filling. My cats got some of the chicken mixed with wet food, a little water and they got their smoothies I mix in the magic bullet, they are happily sleeping now. I will wait a few minutes before going out, don't enjoy walking immediately after a meal.
0 -
Happy Canada Day to our sisters up north!
0 -
DH and I drove out to our desert house on Thursday night because we were going to have some new appliances installed. My dad is living here and his refrigerator quit last year. We bought a replacement, it came damaged, so we sent it back. We purchased another on JANUARY 20 and it kept getting delayed. I finally got a delivery date, but when I called to confirm, they told me it was delayed AGAIN and it would come in OCTOBER!
Long story short, the delivery guys showed up yesterday with the expected microwave AND THE REFRIGERATOR! I'm beyond excited, my dad loves it, and it fits perfectly into the space. He's been living with a mini-fridge since January and says he's ok with that, but I really wanted to get him a full-size refrigerator. Now, we just have to wait 24 hours before we load it up.
All of the appliances match now so we're super happy about that. It's supposed to get up to 116 today (Palm Springs area) but, of course, we have AC. DS drove out from Utah and we're having our super special sister time together.
Love to all,
Carol
0 -
Carol, reading your refrigerator saga tells me I am not the only one struggling with issues here. I just received a new and damaged fridge and didn't refuse it and now am going round and round with Lowes to have it replaced. I did not want to go without a fridge for who knows how long as I can't even order the replacement for a month and it is not available from other sellers in the area either. The dent on the side is not too bad and we are considering just keeping it for a discount. It is hidden by the cabinet anyways. I hate that we can no longer depend on reliable appliances or deliveries. I really like the fridge otherwise.
Mara, love your menu chats. They give me so many ideas! Glad you are finding some help.
I am sorry so many here are facing storms and power outages. I have you on my prayer list. We should have a beautiful day here in Colorado (finally) and I am looking forward to watching the fireworks which are scheduled for today rather than the 4th. Stay safe everyone.
0 -
@cookie54 I was diagnosed in 2020 during mammogram, ultra sound & core biopsy. My onc had me consult with my Breast surgeon,and both felt I didn’t need surgery, just surveillance every 6 month mammograms. I don’t know what to think. I always had mammos but got cancer anyway. I was diagnosed with Lobular Carcinoma In Situ Classic…I meant to really ask a lot of questions last week during my follow up and because I didn’t write them down I forgot.🥴
0 -
@eleanora - locally we are just instructed to head to hospital when medically needing power for various devices. Great idea though. Thanks for sharing
0 -
Oh Hi You All 🥰, everyone is in the living room and just chatting away. I love it♥️I see everyone has a lot going on and sharing each new day.
@iris2022 I am praying for your husband and he gets a good result from the MO on his biopsy. Yes, I too am on edge about my DH’s biopsy next week.
@mara51506 I’m so glad you are feeling good and making recipes. You are back to your old self.
@emac877 Im thinking of you. I’ve been kept awake at night with coughing and wheezing. I’m normally on my proventil Inhaler for my asthma, but I’m wondering if the respiratory issues are caused by the Xgeva as a side effect.
@dodgersgirl @molliefish @micmel @cookie54 @sf-cakes @sunshine99 @chicagoan @chelleg @intolight and everyone else I missed, (((((((gentle Hugs)))))))), and pocket duty for all who are needing it.
0 -
Oh I forgot to mention my day today. I’ve been being really lazy today. I I was doing good until I got my 3 injections at the cancer center on Monday. I get virtually every side effect. I had a bad day yesterday and last night, so today not great. We were invited to a Christmas in July party at our neighbors house around the corner. She has a 4th of July party ever year catered with fireworks on the water here. So this year she didn’t have her Christmas party because her husband was very sick. He had a kidney transplant, that was complicated with a stroke, then a bad infection in his toes, they were amputated, then weeks later he had his leg amputated because the infection kept spreading. They thought he wasn’t going to live, then he recovered after the amputations, and then came home after being in the hospital for the entire winter, so she is celebrating and having both a Christmas & July 4th party….Christmas in July🥰we always go to all the neighborhood parties, but today I told her we wouldn’t make it because, i feel horrible
1 -
shanagirl, I am so sorry to hear you are feeling so bad and will miss your neighbor's celebration. Thank you for thinking of everyone while you are struggling so. I pray you will feel better soon.
0
