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

chicagoan · January 30

@sf-cakes Your post certainly resonates. 10 years ago when I was diagnosed and had a pleurex catheter I assumed I would never fly again so I cashed in my United points for some cookware. Even then I thought "what's the point?" But now that cookware is quite beat-up and I sometimes think of replacing it. I'm biting the bullet and getting a Toto toilet/bidet. Even if I don't live to enjoy it for long it will probably be helpful if I have long bouts of diarrhea, etc. Just thinking ahead😅

irishlove · January 30

Good early morning ladies. We too made the decision to improve our home but not break the bank. Well, did Renewal by Andersen windows and spent $30,000. That included hurricane proof glass, off white color and removal of old windows. Window world and a few others would not touch our project due to the old windows being encased in aluminum. Why I wonder?

We hoped to save more money. We turned three windows that would open to solid built in. Reasoning plenty of other windows in that room to meet fire hazard requirements. One week after we paid for the windows our HVAC died. We had been coxing it along for 2 years, so not surprised.

Whatever we have invested in we bought warranties. And they are transferrable. It costs a bit more, more and money analysts don't agree, but we used a warranty on our fridge and it resulted in a brand new retail $1700 Frigidaire. We made the decision because our home has a VA assumable mortgage on it, and the appraisers hit hard as they are protecting a veteran. I love my home, but would like to sell one day and rent with a move into a townhouse, with no steps, that has a community feel to it.

Thanks everyone for the support and Mara I like your way of thinking. Focus on what you can change is a good mindset.

In pockets for all your needs and scans and life in general.

Irishlove

shanagirl · January 31

I missed a few days on here chatting with you all and WOW, this thread moves so fast, I am reading on to catch up only after a few days from last week.

@irishlove I hate those huge headaches that occur once in a while. I used to get them during my younger years, then after monppause thy just went away. Now i get them occasionally due to my neck issues, but Excedrine always gets rid of them;

@micmel I’m so glad that Gabby ‘s last chemo treatment is today. It’s such a good feeling to put that behind you.. I remember when I finished treatment for stage IIIA BC back in 2009 I felt so liberated and cancer free.😉🩵

@illimae that picture is so beautiful. It’s a blessing to have that view.😊

shanagirl · January 31

@irishlove & @threetree ,I had one endoscopy in my life due to acid reflux issues, but i t was nothing, I was completely unconscious for the whole thing because they did it when I had my first colonoscopy.i found out i had a small hiatal hernia. That’s all. But this past week I’ve been so sick with some kind of coughing bug. The other night I was up all night with the heavy coughing. My ribs chest and stomach muscles hurt from the hard coughing. It’s such a different kind of cough I’ve ever had kind of ends in choking and gagging my lungs out. My scans were clear so not worried about my lungs, but I am really nervous about my esophogus.It started with eating and not being able to swallow food without coughing and feeling kind of grainy in my throat that is happening a lot lately and I’m going to ask my Onc if my esophogus can get mets. That’s all I need. Something new to worry about.🫣

cookie54 · February 1

@irishlove Well glad that's behind you now and fingers crossed biopsies were just routine procedure. Ugh the darn ice, glad he wasn't seriously injured. We are dealing with thick ice here on top of the snow like many of us are. Windows are always a good home investment, glad you guys took the plunge. Sometimes it's hard to part with a big chunk like that but definitely worth it! The townhome dream seems like a good decision especially without steps. I love my house and more so my neighborhood so I know it can be a bittersweet decision. You'll know when it's time…..

@shanagirl Hey there, it's good to see ya! Yes we all do o much gabbing in here lol that if you miss a day or two it takes time to catch up. Hmm well I hope the swallowing issue doesn't get any worse and turns out to be unrelated to cancer! I know it's always something new that loves to pop up to keep us guessing/worrying. Looking forward to us breaking the freezing mark a day or two this week!

@mara51506 How ya feeling? Hope the sun is shining and there is no snow falling. Glad we escaped the second storm that is hitting the southern states. I guess we'll see what Phil the groundhog has to say tomorrow, hopefully an early spring lol

All ok here been organizing and keeping busy indoor the best I can. I really miss my daily outdoor walks! Besides walks I try to do daily exercise videos to keep moving. I have a treadmill in our basement but it's so cold down there in the winter and lack of fresh air and sun it's not the same. Been thinking about buying an inexpensive walking pad, does anyone have one that they like? We can't get the treadmill up from the basement so was thinking I can put in our spare room that gets lots of sun.

Wishing all a good day 🌺

mara51506 · February 1

@irishlove Slept OK this morning. My mood is better than yesterday, was super depressed yesterday. Spoke to DB for a while, explained how I felt alone in hospital even though they cleaned the house and that I appreciated all that. Told him that if told need more surgery on the necrosis I probably would not do it, don't mind MRI to watch it but brain surgery 3 times is a bit much. Watch and wait is best for me. I also need to get a print out of my upcoming cancer clinic appointments. I did make them change one CT scan back to my home hospital, it is easier to ensure I do not have to drink the contrast that gives me the big D right away.

Ordered BOGO bacon and egg mcmuffins and another regular egg mcmuffin meal with two hashbrowns. I will not need to shop for the next week or two so that will be fine. So 3 egg mcmuffins in total, can refrigerate one or two and two hashbrowns, they will be good for a couple of meals.

Got laundry and floors to do, sinks and beds are already done.

I hope every has a good day and in pockets for all.

mara51506 · February 1

Addition to previous post, egg mcmuffin was good, ate the two hashbrowns, put other two in fridge. I can eat those later today OR finish up the garlic bread and part of a tomato and beef macaroni dinner, I will see what I wish to do. I have the stuff to do egg mcmuffins but I just wanted to order it.

I also found a massive haul of laundry detergent under my bed. I used to go crazy on buying the stuff and used entirely too much. Now I barely use any but it all get clean. Love the lysol laundry disinfection after the first cycle. Got some laundry going on for myself.

chicagoan · February 1

@mara51506 I can understand how you've been feeling depressed as you went through and are now recovering from the brain surgery. I wonder if it would be helpful for you to speak with a counselor about your feelings and family issues? That might be one of the services that you could request when you do a follow up with the social worker. I'm hoping that you still have many good years to live and want you to be able to live your own life to the fullest. That is my hope for all of us.

goldensrbest · February 1

Dearest Mara - do not be too hard on yourself. You had major surgery and need time to recover. You need to take some time to rest each day to let your body heal. You are not running a race….or training for a marathon. Be kind to yourself. We all love you to the moon and back.

irishlove · February 2

Good evening all. Chicagoan and goldensrbest, thank you for reaching out to Mara so eloquently. She sure has had a difficult time and your loving support shines threw the posting. Shanagirl, I know how easy it is to jump to conclusions before you know for sure. I do it myself. I give a pep talk in front of my mirror and today was a funny one. The realization came to me that I must be a cat as I've used up almost all of my 9 lives and still trudging on. GGM lived to be 92, her daughter (my GM lived to be 99) her one son 92, her GS 92 and GD 93, Now that's what I call good stock to come from LOL. So onward with this journey.

Mel, so happy to hear Gabby is done with chemo. I hope both her body and mind heal and she knows how much we support her, too. Cookie, you amaze me how you recall our trials and tribulations and support each of us. DH bought one of those small pedal equipment. They advertise you can use it under a desk or table, etc. He loves it and feel it makes a difference. Maybe that would work for you??

Mara, those hash browns sound super yummy right about now. It's 30 and windy and hash browns would warm me up. No McDonalds around here. But we did pick up chili from Publix, our local grocery store. It was even better then my favorite, Wendys. Wish they'd carry more soups. I love soup and half a sandwich. rLoneliness is half the battle IMHO, when dealing with a grave disease. It may help to get support from a counselor. Wish I lived closer. Sending you a hug and wish for happiness.

MO appt. tomorrow. X-geva shot and probably fulvestrent shots (never get the name or spelling correct, so I think I will just call them pain in the arse shots, yeah that'll work). A bit concerned about X-geva shots. My co-pay has now jumped from $600 to $700. The financial lady said she did not have any type of confirmation of a grant for me. GULP.. She wanted me to supply the paperwork, which I do not have. So tomorrow will be interesting. I mean to say it could be embarrassing for me..

In pockets for all the caring folks here, and for all your needs.

Laurel

cookie54 · February 2

@mara51506 As all the lovely sister's so lovingly stated, don't be to hard on yourself you have been through major surgery. I know this is an ongoing situation and our feelings flip flop constantly depending on the kind of day we're having sometimes.Allow yourself time to grieve your current situation, you need to. I think we are so used to always having to be strong and we push so many emotions down that they are bound to return. As others said maybe you would feel unburdened by speaking to a counselor . Just know we are always here for you and we love you bunches😘

@irishlove Oh that ungodly insane copay…ugh! Please don't feel embarrassed who would be able to pay that frequently? It's ridiculous and disgraceful and I sure hope some grant money comes through for you. Yum the hashbrowns do sound delish, something about the crispy edges on them. The air fryer is perfect to cook them in if not ordering out. Hate the winter but love the soup and comfort foods. In your pocket today for your appointments, I hope it all goes smoothly.

mara51506 · February 2

I woke up in better frame of mind, I stopped myself from worrying about the AC that was thrown out. Put it in my head I won't get AC before I get too hot and that there will be resistance over taking me out to get one. I have an AC duct one but sleep with bedroom door shut so cats cannot disturb sleep for me. I still have not fully handled anxiety. As far as a social worker, I don't have one at this point. Still honestly wonder if the necrosis news along with the surgery has me all over the place in moods.

Made bed already, deciding what chores to do. Got a spot on the floor to mop up, someone overindulged in their water, just need a quick mop up. Got laundry to do as well.

Got the BOGO egg and bacon Mc Muffins in the fridge so thinking one of those to start with and make my own hash browns, thinking that diced potatoes would be good as well. Still have some beef and macaroni pasta to have as well as garlic bread from Walmart. If I make anything I deem fantastic I will post it.

I hope all have a good day, in pockets for all for any upcoming appointments. In own pocket to get off my butt and at least get my own appointments for February.

shanagirl · February 2

@mara51506 sweet girl reading your post on depression and your fears of another brain surgery made me see how vulnerable you are feeling right now. Your surgery was literally a brain injury ,which ultimately causes depression afterwards. It’s perfectly normal to feel down and depressed. When i had my Hehorrhagic stroke brain bleed years ago the doctors told me and DH I would feel depressed and lose my sense of humor as a result. I did go through a period like that but as my brain brain swelling during the coma began to diminish, I did get back to normal mostly. Also Mara having a devastating disease is depressing in itself. I’m sure your brother understands that, It’s good to have him to talk to. Just try to remember that you may be feeling down on yourself because you are not keeping up with all that you want to do around the house. Take one day at a time and just keep one goal for each day. We all love you here Mara and want you to continue to recover from this ordeal. Try to rely on DB & SIL to talk to and here we are all available to listen to each others struggles.😘🌷

irishlove · February 3

Hello everyone. Hope tonight finds you peacefully curled up with a warm blanky and a good book! We took the covers off the outdoor plants and guess what??? You guessed it, they revised the weather forecast and tonight thru tomorrow morning we will have a few hours of below freezing. Too tired to recover and it's not going below 30, so take my chances.

Well I have some major news. I'm still in shock and not sure how to absorb this but here it goes. I am in remission!!! Unbelievable and I guess I'm accepting this with a restrained measure of acceptance. It's not like turning a switch on and off. I can't just turn off my mindset for 3 years of MBC. Also, I still have MS to deal with. It's not likely to threaten my life, but it's still a bitch to deal with. I guess I need one more scan to placate me. Next scan is in April.

I feel so blessed as it takes a lot to deal with DD and DGD. They are back due to cold weather and their camper is not suited for temperatures below 50 (no insulation). We laid down the law yesterday that DGD must go to school, use a grant and get help for her social anxiety and ADHD. Grants opened up yesterday. Lets say we were met with a whole lot of anger and mind your own business. We have a game plan with proper contacts and will secure a lawyer if we must.

Wish spring was coming sooner. I'd like to feed Phil to my dogs, well they wouldn't eat that mangy critter anyway. So maybe someone could dispute his findings. lol

In pockets for scans and life in general.

Irishlove

intolight · February 3

@irishlove Wow—exciting news. Remission! That's just what I need to hear to bring a smile to my face. So happy for you! And as for your kids, I am glad you have a gameplan. Stick to it. Your DGD deserves your intervention and love.

@mara51506 Sweet Mara, I understand your feelings. I am not in a happy place myself right now, but we soldier on. The fact you do all of this basically alone says so much about your character and strength. You are a special lady and inspiration.

Tomorrow is chemo day so I am planning accordingly. The fact that we are supposed to get a little snow in the morning doesn't make it any better even though Colorado desperately needs the snow. This is my fourth infusion, then I have next week off. My oncologist warned me it gets harder the older you are (almost 73) and the longer you have been on treatment (almost ten years) so I don't expect an easy time, but I need to function and enjoy my family. Any words of wisdom are welcome.

threetree · February 3

@irishlove - Congratulations on your showing of no cancer for now! Fingers crossed 🤞 that this lasts a long, long time for you. So sorry about the family issues. It's so hard when you really care and understand, but also have to put your foot down and set some boundaries for yourself. I hope everything works out well in that regard.

Re Phil, I told a friend about his prediction and that when I thought about it, it'd be 6 more weeks of winter, no matter how you look at it, if March 21 is indeed the first day of spring. Seems like we just have to wade through the winter and wait, as always.

chicagoan · February 3

@irishlove Congrats on remission! Hope it lasts a very long time. I admire your patience and generosity with your daughter and granddaughter.

goldensrbest · February 3

Irish - I echo all the congrats on remission and pray that it continues for you🙏🏻🙏🏻. Glad you have a plan for other family members. Hopefully you can make things happen.

eleanora · February 3

@irishlove

So happy for your terrific news! 🎉 Hopefully this uplift will help you stay strong in dealing with family issues.

irishlove · February 4

Intothelight, I hope your chemo session went fast and was gentle. Curling up with a nice, warm blanket and chatting with someone makes the time go quicker. Well I am a chatterer, so I hope no one minds, er too much. lol

Thanks everyone for the congratulations and support with the family dilemma. There was a time I wouldn't have tolerated this b.s., but when you are sick, well it takes too much out of you. MS has been a part of my life for 25 years, and unfortunately it has progressed. I'm so grateful though for all my blessings.

Irish

mara51506 · February 4

@irishlove I am so very happy on your remission news, takes out cancer from what you deal with in your life. Please continue to visit us here anyway, we all love to hear from you.

I forgot to complete my post today so here is how today went, completed laundry, bed was not made, will make it to get into it easier and make it up tomorrow.

I ate one of the beef and macaroni meals, heated 5 mins in microwave, put slices of garlic bread on top of it and heated those for the last minute. Once out, put some regular mayo as a binder, salt and sour cream and onion seasoning. Very good meal. Then couple hours later ate up the rest of my potato chips, sour cream and cheese flavour and after that a yogurt, was really very nice to eat

cookie54 · February 4

@irishlove Congrats to the most amazing news!! May your cancer stay quiet for a very long time! Fingers crossed that you don't have to resort to your plan and DG gets the help she needs and deserves. As hard as it can be you're absolutely doing your job as her grandma.HUgs

@mara51506 Wrapping you in a hug, continue to let your emotions flow and take one day at a time. I agree with shanagirl your brain has been through a trauma and sometimes it just needs time to reset. Sending good thoughts your way today 🌺

@intolight Hope you're feeling well post chemo. Agree we are getting closer to the end of winter and it never feels quick enough!!

Coffee cheers to all here today, in your pockets for all your appts this week.❣️

intolight · February 4

Thanks @irishlove and @cookie54 I usually feel pretty good the day after chemo so hoping I can manage today. Chemo went well except for the Benedryl part. It is the worst feeling for me and makes me twitch a little. I am going to ask my MO if we can reduce that a bit. I know they give it so I don't have an allergic reaction so I don't know what she will say. My nurse DD suggested I give myself one pill an hour before and they reduce the Benedryl by half during. I never drive so it should not be a problem. I put ice on my hands and feet to stave off neuropaty and so far that works well for me except I tried a new glove and feet covers the charge nurse gave me (I think it was a sample) and they were so cold they hurt so I had to stop and just touch the top. I am praying it was enough too. Next time I will just make the gel pads inside cold instead of frozen. I also get knee pain after a couple of days. It is called Paclitaxol-Acute Pain Syndrome if you want to look it up or if any of you ever had it. It was suggested I use magnesium cream on them too so I will try it.

Anyway, it snowed last nighe (yay for Colorado) but should reach 46 today and almost 60 tomorrow. We really need more snow.

Blessings everyone.

mara51506 · February 4

@cookie54 and @shanagirl Yes my poor brain has been through a lot, I have no doubt that my brain is still healing. Some spots I touch are still a bit painful and the top of my skull is still funny feeling, getting harder as it should be.Growing hair back, feels better to have some of my hair back so the wig feels good on there.

I spent a while waiting to get a couple of appointments for this month and an echo, got an MRI next month, was scheduled late at night so got it changed to late afternoon instead to ensure the Paratransit to and from hospital.

So Not sure what food I want today, will likely have some beef macaroni at some point though just ordered a couple of burgers. The beef macaroni will happen later today.

I do hope everyone has a good day, in pockets for all.

shanagirl · February 4

@intolight I hope you are able to have your dose of Benadryl reduced so you don’t get those twitches side effects. When I used to get chemo infusions in 2009 I also had the Benadryl and also Ativan with the “red devil” Adrimycin whatever the drug was. I got the Paclitaxol and Cytoxin. Those were rough times on that chemo cocktail.😬.So many days after of side effect pain & mouth soars. the only good thing was the Benadryl and Ativan made me sleep or doze during treatment.😴. @irishlove @mara51506 @cookie54 thinking about you today. Right now I’m not much inthe mood for typing. I’ve had this coughing bug all week and have missed 2 days of PT. Just too tired to go. all day every day I feel lik I want to go to sleep but force myself to stay up. yesterday i went for my 6 month teeth cleaning appt. .It went smoothly had a good checkup no problems. So I’m glad I pushed myself.

love to you all…….🥰

goldensrbest · February 4

Finally got scan results after a week of waiting - still stable thanks be to God! Only significant finding was severe osteoarthritis of my left hip. I saw my ortho last week and he was surprised that I don’t have more pain but for now there is no need for a hip replacement.

Here for pocket duty for all. Happy hump day🐪🐫🐪

threetree · February 4

A hearty congratulations 👏 on those stable scan results, @goldensrbest . I'm really happy for you.

chicagoan · February 4

@goldensrbest Great news!

cookie54 · February 5

@goldensrbest woohoo , congrats on stable🎊! Happy for ya , let’s keep it rolling!

runor · February 5

Hello everyone! It has been a minute.

Tonight at 10:30 I brewed a pot of coffee and drank two cups. Must have known I would decide to pop onto BCO and do some catch- up reading. It is now 2:27 a.m. and I am wide awake. Also ate half a bag of Cheezies while reading and will be cleaning those obnoxious, orange crumbs out of my keyboard forever.

I am obviously out of the loop but picked up a few threads as I read.
Irishlove hooray on your remission! That is wonderful news and I understand your slightly skeptical approach. You want it to be true and don't want to be disappointed. I hope for the best! You also mentioned taking gabapentin for nerve pain. Hubby has CMT ( a fairly recent diagnosis late in life) and he suffers with nerve pain due to genetic nerve degeneration. He also has been given gabapentin and doesn't find it all that helpful. What he does find helpful is lion's mane mushroom tincture. We are not big into woowoo medicine. But he really feels this has greatly reduced the stabbing, shooting, electrical burning type pains he gets. When he quits the tincture, those pains return. He also has crushing pain from utter destruction of the cartilage in both his ankles. Walking is hell! The lion's mane tincture does NOT help with the osteoarthritis pain. But does with the nerve pain - two totally different types of pain, according to him. He also recently had a throat scope due to unrelenting acid reflux and now he has trouble swallowing food. (we are still waiting for biopsy results) Incidentally he was also diagnosed with high cholesterol, freaked out, decided randomly that drinking pure cranberry juice will fix him. It has NOT fixed his cholesterol but it has fixed his chronic acid reflux by about 80%! But wow - that stuff is brutal to drink! Who knew!

Mara Girl…wow! You bounced right back. Had a bit of a go there but came through. I cheered! Reading about your menu adventures I wonder, have you ever tried making your own yogurt? When yogurt got so expensive I got angry and thought, screw this, I'll make my own. Turns out that I can make it cheaper than buying it. One problem is that you have to hold it at a steady, warm temperature for an extended time and this is where I had several failures. At least that's where I think things went wrong - hard to know for sure - yogurt can be finnicky. But I finally found a work-around and have had success since. If you are interested I can give you a boring how- to here. Stay strong!

Mel did I read this correctly? Your daughter is going through breast cancer treatment? I don't have words for this. It must have taken all the air out of your lungs and blood out of your veins when you heard that news. That is NOT FAIR and NOT RIGHT! I hope I am wrong. And I hope if I am not wrong, that all the healing power of the universe is with her right now.

As for me. Life rolls on. Hub is having more and more health problems. Not sure what is due to aging (63) what is due to this new CMT diagnosis. Sadly we found out that our daughter has inherited this genetic disorder and will face issues that cripple her as she ages. At least if she knows it's coming she can get care early to help slow down the worst effects. Hub never knew he had it. His father has it. His sister has it. No one knew a thing about it until a couple years ago. But he is having more and more problems and that changes how retirement looks.

I have a mamm coming up in March and always get tense. Pain in boob was the thing that urged me to get a mamm way back end of 2016. They always say breast cancer doesn't hurt. Well mine did! And that boob is hurting again, round back to my shoulder blade and that sets off alarms. We know that cancer mind - leaps to the worst case.

Other downer thing is my eyeballs. They have lost their minds! About 2 years ago I'm cooking dinner when suddenly my eye goes all hazy and foggy and flashing lights. Off to eye doc who says I have a posterior vitreous detachment. In other words, a massive floater and bleeding into the eyeball. 18 months later the other eye did the same thing. So now I have markedly obscured vision in both eyes. It's not a detached retina, but it puts my chances of having a detached retina up by a huge percentage. Looking at the screen now is like someone put a blob of vaseline in my eyes. You should see me try to thread a needle! Ugh!

We are having a weird winter. No snow. Rain. Mud. Feeling almost Spring-ish. Have urge to start seeds then remind myself, slow down. It's only February. In Canada. You are not going to escape winter yet!

Hugs, health and healing to you all. It was nice to poke my head in the living room and see what's going on.

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

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