My Husband, My Life, My Love, My Family, My Cancer

illimae

Awesome update Mara! Congrats 🎉

Kikomoon

Yay Mara!! No worrying is GREAT!

Micmel

it’s 17’ degrees outside. Snuggleville here I come.

Available for pocket duty tomorrow early. I’m getting my nails done. So Friday is hair day. Kinda cool. Don’t know what color yet. Gotta get my Snowflake ! Hugs to all.

Tanya_Djamila

Hugs back Mel

Great news Mara- doing a happy dance

booboo1

Happy dance, Mara. The giggle wiggle coming your way (can you tell I’ve been loving life around a 10-month old?!!!). The “giggle wiggle” is a stolen phrase from Mae (from her cereal dance), but that’s ok. It’s all good.

Thank you all for your well wishes. I flew back to FL yesterday, and DH is behaving nicely, as expected. We have some things to talk through, but I really think the move may be the best thing for him too. I think he’s also in shock that I would actually follow through and do what I’ve been threatening—to leave. Hoping he decides to get his act together…but if not, it’s not on me.

I can’t explain the feeling I have…like I’ve been freed from jail. So yes, you are hearing that in my writing. And of course my over-the-top happiness is that I will be helping with my niece’s baby Alex on Monday and Tuesday’s. That’s when he comes to my sister’s house. I think it all boils down to feeling needed. I am needed there. Here I sit and have no purpose. There I have lots and lots of things to do and someone to do them with. Happy, happy. I can’t wait for the road trip. It’s going to interesting…

Kiko, thanks for the info. I will share with my sisters and see if they are interested. It looks like a boatload of fun!

mara51506

Thank you Tanya so much and everyone else for the thoughts as well.

I have a CT scan today that both the doctors and myself don't seem to be worried about so much. Admittedly due to being lucky that mets did not show up from the chin down after initial treatment and rads but the MO said they will call me with results as they don't feel it is too much of a risk. That will take care of the medical appoints for this month anyway.

In pockets of all who need it whether for scans, side effects or mental stress as well.

GoldensRBest

Just a quick check in - so many appointments since moving in November. So many doctors to take over care. My new internist has met with me 5 times since I got out of the hospital with crazy septic shoulder. He said he's had a lot of patients with complicated issues but I was probably tops. Geez thanks MBC and all my other problems. Have 2 weeks of PT under my belt for the shoulder issue. Was told it could take a year for real healing…..🙄🙄. My new MO has scheduled my scans and follow up for next month. Waiting for genetics testing, Had negative BRCA1 & BRAC2 in 2014 but she says there are many other tests now. Saw a spine Ortho for my back - he said even if I had no other medical issues he wouldn't touch my back and referred me to a pain specialist. That appointment is in early March. Also need to schedule an appointment with a rheumatologist to assess my severe arthritis.
In the meantime my hubs went back to where we came from to provide call coverage to a couple of the docs. His former nurse and hubs from Ohio came up to help me. They both became dear friends for the 10 years we were in Ohio. And Susie is the best - she loves to cook and brings lots of meals with her. I'm glad I stayed behind - temps yesterday morning by hubs wer -24. When he drove to the office it was -16. Yikes. The area we moved to is about 15 miles from Lake Michigan and in the winter it is a tad warmer and the summer a tad cooler.

Hugs to all! Mara - so happy for your good news! May that be all we hear!

Laurie - love the peace and contentment you have found.

Here for pocket duty - Susie made great lemon bars

emac877

I'm so happy for you Mara! That is great news.

emac877

Yay Mara! That is great news!

Laurie- I love the "giggle wiggle" and that you are happy. It reminds me of the "truffle shuffle" from Goonies. LOL.

Goldens- I'm glad you are getting settled and have good people around you. I haven't done a big move in a while but every time my family considers relocating back to Arizona it's the medical connections and all the other connections that seem daunting to set up again. I'm glad you are getting good attention from your new docs.

Popping in to say a good morning (West Coast good morning) to all of you. It's freezing here but nice and sunny. Right now currently 28 out so I have my tea and I'm grateful for blankets.

Sunshine99

Good morning to all. booboo, I'm proud of you for what you are doing. Leaving takes courage. I'm glad you're going to get to spend time with your grand-nephew. I imagine that it will be good for both of you!

mara, hoping your scans continue to be stable.

Goldens, it sounds exhausting to say the least.

Wishing everyone a great day.

Carol

mara51506

CT scan if done, was not bad and very quick. Will receive a call when the results come in.

Elderberry

booboo: you sound so much happier. May it continue. I hope the shock you delivered him will bring positive changes for all of you.

runor: I am a hypocrite. I like meat. But if I had to feed, keep safe and look my dinner in the eye I couldn't do it. My chickens would be egg-laying pets. When they died there would be no stew pot for them.

mara: good news they are not worried. Keep us posted.

Mel: I need to get a haircut. I am starting to look like an English sheepdog. Funny, I had wild chemo curls and a nice shade of grey. As the curls got cut off the hair came in reddish-brown and straight. Wow, I thought, it hasn't been that colour for decades. Well, alas, I just noticed roots coming in and they are some shade of grey. It was good while it lasted. :-)

Goldens: I can't remember how you developed a septic shoulder. Sounds painful, scary and just plain awful. Not sure I like being told by a specialist that I am unique. I was happy my bone biopsy came out negative but the "glow" is still an enigma. I have another PET around March. Will it be gone, manifest itself? Hoping for the former, not the latter.

Cheers to anyone I haven't mentioned by name

Kikomoon

elderberry and Mel- I need a haircut too. Really starting to look like Gargamel over here since my hair won't grow on top. 🤣 I guess I would rather have hair, because that's what society expects, but honestly it's been the least of my problems and I wish it were common that ladies just shaved it all off, less hassle. I have a wig I like and a lot of funky scarves, or just a baseball cap will do. I do miss my widow's peak though

mara51506

When I lost the top of my hair permanently. the first year, I kept a shaved head and went through a phase of rocking the bald head, especially at the gym. I would also do scarves as well. Without makeup, I looked liked Uncle Fester but I liked it after making up my face. Second year I did scarves. I never liked to let my get long because Gargamel is exactly the look I have too. Nowadays I wear pixie wigs, usually in blonde with roots so it looks more natural as well. I use a clipper to keep my existing hair short, as short as it will go but forgo shaving as that is more trouble than it is worth.

Kikomoon

Mara, I have a chin length wig but wanted a pixie. All the ones I tried were too poofy for my head asmy hair never had that much body to it. What is the brand / name of yours? I also have a large head so can only wear certain brands.

illimae

Kikomoon, funny about the wigs. My head, which I always thought was normal sized is actually a little small than average, so wigs are lose and tend to bunch up in the back. DH gets amused when to don't fit well on my “peanut head" lol

Micmel

I had a wig computer generated imagery made. It was gorgeous. My friend who was Allsostage four was dying and wanted to have long brown hair again until she died. My dd was close to her dd at the time. I had worn my wig two times. I gave it to her and they had pics taken in it to have for the family. I felt it was a good use of it. To make so someone else could be happy if only for a while. When she died, I was on my way to the funeral and fell face first to the concrete. Busted my nose and lip. Couldn’t go in making a Scene so I had my son drive me home. I was bleeding. It was her time. Not mine for any attention I would have hated. . I will not loose my hair again. I can’t do it again. Nor radiation scars either. Just can’t do it. I’m like Linus. With his blanket. Some people it doesn’t bother. I wish I could be more like that.

mara51506

https://www.paulayoung.com/product/casey+whisperlite+wig+by+paula+young.do?sortby=ourPicks&from=Search

I like these because they don't make your head hot like other wigs can do. These ones are not poofy and inexpensive. I have some wigs I put styling products in but I mostly fingerstyle the ones I have. I wear the spun gold, light blonde, some darker blonde pieces and brown roots. Roots give a wig more dimension. These are natural looking and will not take much to style. Stick to a colour you are more used to. They should last at least 3 months each if not longer if finger styled. If you get any wig, get a velvet head band to hold the wig in place.

Tanya_Djamila

Hey ladies

Checking in with stable MRI results! Thank you everyone for pocket duty. Doing the giggle wiggle dance.

Booboo it’s so nice to see you upbeat and planning fun things!

Tanya

Micmel

YAY Tanya. 🎊💐💕

It’s an insomnia night can’t fall asleep. It’s funny how some days my mind won’t shut off. Like an old time reel at the. Movies. The end of the tape making that tapping sound at the end. Whap whap whap. So many things to think about. I was going through all my papers since everyone was mentioning the Dnr. I checked mine and it’s all set. I also checked for the policy I had a for my children. It’s to be split In half for a house payment down. That is what I will be leaving them. A. Nice chunk of change. Just a shame I have to loose my life in order for them to have it. Life is cruel. Life is cruel.

SeeQ

Booboo - that feeling of relief or being freed is really telling. I'm so glad you're doing what you need to do for you.

Mara - yay for a good MRI and confidence about today's CT.

Kikomoon- which wig brands work for large heads? I don't need it now, but I expect I will in the future. I'd like to make a note for then.

Hi to Mel, have fun getting your hair done tomorrow - did you decide to color? I have loved not having to color, but I was only coloring to cover grey - and I've gotten many compliments on my (mostly) grey blend. I'm happy to hear you're getting out and doing things you enjoy.

I spent two days traveling with dh this week. Today, we moved my daughter into her new rental house. She is so excited, and I am so excited for her. And I am very tired. New PCM appt tomorrow is an hour from the house. I'm sure looking forward to sleeping in on Saturday.

Waving to everyone in the living room.

SeeQ

So, I must have had the page loaded for awhile when I responded..

Tanya- yayfor good MRI results.

Mel - ouch on the face plant and sorry about having to miss your friend's funeral.

illimae

Tanya, yay for stable 🎉

moth

Yay for Tanya & Mara!

I'm doing well after my first Trodelvy yesterday. Still on steroids & they seem to be controlling everything.

hugs

mara51506

Tanya, so happy you are stable.

Mel, I can empathize with keeping your hair. Mine was long when I started chemo. Shaved it off immediately. I did have super cute curly hair gown in before the brain met. Been bald since. Wigs are the only thing I know now.

candy-678

Woohoo Tanya.

moth- Glad to hear Trodelvy is going good so far. Hoping it is kind to you.

KBL

Tanya, so happy MRI shows stable. Yay!

Moth, glad your treatment went well and you were finally able to get it.

I also have a CT Monday that I don’t think will show anything. I haven’t had one in five months. Just checking the kidney cysts to make sure they’re just cysts.

I can’t remember who suggested a GGT test because my ALT and AST numbers were in the 60s. I did yesterday, and it is normal. That made me feel good. Liver seems to be just fine.

My thyroid is off again. I’m now hyper again. The swings are not fun. I told them to just give me 30 days of meds instead of 90 because I have to switch so much. They didn’t listen. I will tell them I will only take 30 for now. I need to get this thing stable

Sunshine99

mel, I know exactly what you mean when you describe the whap, whap whap sound. Who doesn't remember that sound except for "kids now days" who only know the sound of the DVD drawer opening up, right?

booboo1

Tanya,

So glad to hear the “stable” news. Good stuff. I hope you hear that for many years to come.

mara51506

Tanya very happy with your stable report. Always makes me happy to hear good news.

Moth, glad the new drug is treating you well too, so important for us to be on good treatments.

My hospital social worker finally called. I had requested months ago to talk to someone, even just to get directions on where to go to get affordable housing forms. It was an interesting chat to say the least. She asked about my situation. Told her about the apartment's new owners etc and wanting to finally fill out what I need to get into housing.

What was unexpected was her suggestion that I take money from the house sale and go get another apartment with no stairs because I fell twice. This was in my chart at the hospital which threw me when I was just trying to find out how to get forms I need to fill out for affordable housing as my income is low. I am not concerned about my mobility, or even the odd fall, it does not happen all the time. I would say twice in two years is not problematic. Stairs are fine. I take my time, especially when carrying in groceries etc.

Disappointing call til almost the end when she did get me the number to call to have forms mailed out to me. I called, got them to send some forms in the mail and was pleasantly surprised to find out that if I reach 55, the pool of affordable places expands which means that I could wait a couple of years. The agent on the phone did not think my trust should be an issue due to it being based on income which is so low now. That gives me hope. I am nowhere near moving yet but it would be good to get started on that road as well.

So social worker call was kind of a fail but the phone number did give me good information and a place to start on getting my place in line for affordable housing. That is encouraging.

Told my SIL as well what we talked about and the only thing she got out of it was that I may need to move since she thinks I'm extra wobbly on the stairs. I did say usually you see me taking heavy groceries with a knapsack or bag over my shoulder so I am cautious but not off balance.

I obviously need to keep letting people see that I can do things for myself and stop mentioning anything else as there is a misconception that I cannot look after myself or am feeble in anyway. All in all, good stuff rocks and the irritating things are minor in the grand scheme.