My Husband, My Life, My Love, My Family, My Cancer
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Good morning ladies~It is again cold outside and snowed a tiny little sheet of snow that you could blow away with your mouth. A nuisance snow I call it. I looked into the mirror this morning and I actually saw someone looking back at me, that resembled me!!! My hair is growing so fast. I am starting to lool like myself again. Now. ...... if I could only find my boob that I have seemed to have lost!! Ugh. If only it were that easy.
Has anyone here had any reconstruction done at all? That is my next decision to make. Do I ? Or do I leave things alone because of my unwanted friend lymphedema? That would be the only thing left that doesn't resemble me. If I could have that fixed, reduction on my right boob, which is really annoying because it's big. So can't they take half of my other boob and just pull-up some of my mid section?? That is what they were going to do before I had to had a liver resection. That got pushed to the way way back. I didn't qualify for the immediate reconstruction for two reasons, #1....length of surgery, I was having a liver resection, Node removal complete, and a mastectomy on the same day. He thought it was way too much.(because I only breathe on one lung) #2 I didn't have enough fat at the time to pull from my mid section, basically I had no stomach fat and was very muscular). Now they can have at my stomach!! I am sure they're able to harvest some goodness now! Even if i don't eat a thing. I still can't loose a darn bit of weight!! Stay warm. Much love ~M~
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Thanks Claudia and Mel. Claudia, glad your blood work came out great! I talked to DH last night and asked if I can just get through my scans in February, then maybe we can get away somewhere. I wouldn't mind just going up to the mountains here. He can ski, and I can people watch and read a book in the lodge. I think he thinks we are made of money! I've been on disability for 4 years now, getting half of my pay (which wasn't much to begin with) and we still have the same bills. I figure he'll just use my life insurance money to pay for all these trips! LOL! Claudia, I would love to meet you too. If I head out your way, I'll let you know. We are going to Orlando in April, but that is with our 4 children, son-in-law, 3 grandkids, and my Mom. We are doing Disney. Rented a house with 7 bedrooms and 7 bathrooms, with a pool, and hot tub. 4 miles to Disney. We'll be pretty busy that week for sure! My husband says that's why he needs to go on vacation, because that won't be a vacation! LOL I am seeing the oncologist and having my bloodwork done on Fri (the only day she is in the office, makes it hard to get an appointment scheduled). I am going to ask her to schedule the scans, in a month. That will at least give me an idea of when a good time to get away is.
Well, I suppose I should take a shower (it's 11:30!). I should go out with my mother, I haven't in a couple of weeks, with the cold weather we've both been hibernating. It's sunny and in the 30s today (bring out the bikinis!). Have a great Tuesday everyone!
Lynne
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Lynne(Man)~I hope you're doing ok today! I know you hadn't been feeling too good! My doctor told my son that the flu is rampant! My son hasn't been feeling too good with his stomach. All of a sudden now, it's been hurting. Another thing to worry about. It never ends honestly. I am glad you decided to mention taking it easy for a bit to DH, this weather stinks anyway. I have an eye doctors appointment today, of course,it costs a lot of money. Makes you sick really! But it's that time anyway. I just hate all appointments honestly. New glasses I can deal with I suppose! I have a lot of things that I have to return from Christmas to Kohls. Sizing and things like that... it's been too cold to even think about going to any store as far as I am concerned. Yuck! Today isn't much better, but I have to go out anyway. Just have to warm the vehicle up , which I also don't like one bit. Hope all is well be safe. Stay warm. Hugs to you my friend. ~M~
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Well my tm's were up. Over 100 for the first time ever. The other two were up too. Kind of thought they might be from everything I've heard from you all. Onc is not concerned..he mirrored what I've been told about Ibrance working veery slowly. He'll do a scan in three months and see what it shows. The fatigue has hit big time. I’ve been begging in the recliner since I got home and feel like I could go right to bed
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Gracie~ I think that tends to be a common thing in the beginning. Your body is wondering what is going on i am sure. The fatigue is a bear. I agree. Be kind to yourself. Try to get restwhen you feel you must. Drink lots of water also. It may also be tumor flare! It took like over three months for me to really be able to called stable hang in there beautiful! Much love friend ~M~
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Hi Gals! Good day for me-got up to help get my grandson off to school.(DH/Grampa does breakfast and I pack lunch/backpack). Then fell dreamily asleep in front of the TV til noon! Got up and did 2 hrs housework, and then back to couch! Right side pain has been a little less. Took Grandson to ice skate after school, and he always has a ball. Also, as Lynn(Man) mentioned, temps in upper 20's are much more bearable.
Followed the lymphedema conversation. I was fortunate not to have it at initial DX. I did have a really weird reaction when I started the Ibrance/letrozole for the MBC. Swelling at site of lumpectomy and slightly sore upper arm. Had the massage which really helped, and it resolved. My breast surgeons' office was amazing in teaching about lymphedema, and helping to prevent it. I feel for those of you having to endure it. It must be incredibly uncomfortable when it flares. As if the damn breast cancer isn't enough.
Gracie- hopefully the fatigue eases with time. I hated feeling like I was slugging through jello all the time. As Micmel said- rising markers could be tumor flare, which is a good thing. I had my first scan 3 months after starting Ibrance and had a very strong response and I hope you do,too.
Lynn(Man) I get why you don't just want to zip off for a weekend in Florida. it's a lot of travel for just a few days. I do better when things are planned in advance. I have always loved being at home, and DH likes being home as well. We go overseas every 2 years for two weeks, as we both do love European travel. I'm not sure I would have wanted to travel much when I was doing chemo back when first diagnosed in 2014. So, I hope you come to a decision that you are happy with. You deserve to be comfy!
Grannax- glad you are better! Hope the trip to the grocery store was successful. If I remember correctly, you had to reschedule your scan?
Micmel- did you make it through your eye appmnt and errands? I did not have a masectomy, so no reconstruction. It's such a personal decision. I can see why they didn't do it at the time of your surgery-Holy Cow! Your body would not have taken it.
Claudia- hope the next CBC is better! Good luck with everything you've got going on!
Thinking of everyone, hope you are feeling OK, and coping with MBC's insults- Love MJH
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Hi all from a wet, windy, occasionally snowy Ireland. Great to see family and friends, great food and conversation as always. Some people same as ever, and some with failing health. Managing to keep up with everyone, just going to bed a little earlier than the rest. This time next week will be bloods, Doppler heart, chemo, so enjoy it while I can. Will send some photos later.
Only had a quick read through our thread, so hope everyone is good. Much love xx
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MJH~ eye doctor went well thank you for asking ! $325 without eye insurance! Makes me sicker than I already am! But I have to see. It snowed here last night not sure how much, but I know it arrived. You can always tell in the morning when you wake up and everything has this white glow behind the blinds. Glad you had a good day ice skating, I used to love that. I miss being able to do things. I miss mostly everything about who I used to be. Now I am me, stuck inside of a carrier, who is now just housing me until it's over. What a crappy way to feel. Hope today is as good as yesterday!!!!! Hugs to you ! Much love ~M~
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Minnie~ Hi sweety, so nice to know you're safe and having fun... it's so great to hear of all the memories you're making in Ireland!! Wow. Can't wait to see those photos. Glad to hear you're getting your rest. It's so important to us.. without it, I don't think I could even walk up the stairs. Enjoy yourself. Don't think about those icky things until next week. I know it's hard. Boy do I ever. I just want this trip to be great for you! Much love my friend ~M~
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Micmel. I had reconstruction way back in 93. It was a TRAM flap. It turned out great and I'm glad I did it but it was a difficult surgery. They do things differently now. You could consult with a plastic surgeon. With your arm/arms and other issues, it would be a hard decision to make.
The grocery store adventure wore me out. But I'm glad i went. I didn't get any snow but its very cold here. I did have to reschedule my PET until next Tuesday.
I'm feeling recovered from the flu. I hope none of you get it.
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Grannax~ I just don’t know if it’s worth it. I have to consult a doctor like you said., But I desperately want to feel normal again. Well as normal as possible I guess at this point. The flu has been rampant here and nasty. My son had some blood work done because his stomach has been bad for a week now. They are testing him for celiac disease and gluten issues. I don’t know what it is. But it stinks. Glad you’re feeling better though. Groceries are expensive and everyone seems to be rude. They come right up on your back and walk in front of you. There isn’t no common courtesy anymore in public. And in some of the millennials generation. All I want to do is just live In peace, as we all do! Snow ick got maybe 3 inches top! Hugs to you ~M~
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MJH, I hope you and Micmel are right and it’s only tumor flare!
Minnie, can’t wait to see pics of Ireland!
Micmel, doing reconstruction with lymphedema would be worrisome for me too. Totally get that! But I can tell you that I have beat myself up for years now over not having done reconstruction. Not having a boob just takes away my self esteem completely! If I had it to do all over again, I would do reconstruction.
Grannax, so glad you are feeling better! That flu is soooo dangerous this year! Take care
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Gracie~ I am certainly going to look into it. I don’t like feeling like half a woman. This is such a cruel disease, everyday I still feel like it kicks me down. No matter what. When I feel half decent, or feel a little tiny hope of feeling like I used to. And then something happens. I am only 47, how is someone expected to live like this, never knowing basically anything, and having your life ripped from your being and soul. To add bonus points. It actually takes body parts. Disgusting disease I hate you. I have to at least try to look into it. I think I’ll kick myself if i don’t . Thanks Gracie honey. Love you guys ~M~
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Mel-I am feeling better, thanks! I have chemo next Fri, so I'm going to enjoy this week and a half! Going out to dinner (even though we got 4 inches of snow) tonight. I chose the restaurant, and it's only about a mile away, although downhill, so we'll have to come back uphill on the way home. Good thing, I have snow tires and all wheel drive SUV.
Gracie-My tumor markers jumped a little on Ibrance too. The scans were ok at the 3 month mark, and I was on it another 3 months, until those scans showed new tumors. I hope that is all your's is too. My oncologist also told me that Ibrance works slow.
I think that we are going to get away this weekend. My in-laws left for the winter (they'll be back in May) last week, and their home is on a lake (they bought it when my husband was 10 as a second home, at 70, they decided to sell their home here and move up there permanently, after they put a foundation on and drilled a well, and added heat. It's at the end of a dirt road and off the beaten path. It's an hour away. Very quiet (they shut the cable off for the winter, fine with me!) and peaceful. I think we are both needing that about now! Best of all, it's free! We have friends that live not far from there that we may meet up with Sat night.
Tonight we are going out with a couple to dinner ,that we haven't seen in a long time. We got 4 inches of snow (so far, still lightly coming down). The restaurant is about a mile downhill from our house. As long as we can make it up the hill, I'll be happy. We have snow tires and all wheel drive on our SUV, I think we'll be fine.
I hope everyone gets good results, and has a great Wednesday!
Lynne
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Good afternoon ladies,
MJH you sound energetic staying busy taking grandkids skating. My GD will be here at 5 for HW help. I enjoy the time.
Gracie sorry to hear about your elevated TM's and I hope it is as the ladies on the thread suspect just a flare. I don't get them done. I used to years ago but this ONC doesn't do them and it would be one more thing for me to worry about or he could use it to find something.
Claudia I hope your CBC comes out great.
Lynee NH enjoy your weekend getaway it sounds beautiful remote quiet and amazing.
Minnie you're Ireland trip sounds fabulous. I'm looking forward to seeing pictures. I'm happy you were able to muscle through all the socializing.
Grannax and Micmel I never had reconstruction surgery even though I had a partial masectomy when I was 46 I didn't want to go under the scalpel again and it wasn't offered to me before. I guess that wasn't the protocol back then 14 years ago. It's ugly but not a rep of who I am. After 2017 two surgeries ugh. I don't want anymore surgery. Micmel I hope that it gives you what you need when you're finished you like what it does for you.
MY DH and I will go away for one day to meet some relatives Friday - Sat. They're right in Orlando but it's an hour and 1/2 drive without the sometimes awful traffic, so we decided to rent a room and see some relatives Friday and the others Saturday and then drive home.
PT is fun Micmel but I don't do all the exercises at home that they give me bad patient I guess.
Have a wonderful Wednesday. anyone who I missed please take care enjoy your day. I sometimes read and don't respond but I am always comforted to have somewhere to share my feelings.
I'll be covering plants tonight.
Tanya
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Lynne, enjoy your trip! Sounds cozy and relaxing and free is the best yet! Regarding reconstruction, I've never had it. I had both of my breasts removed at the same time and had a hysterectomy 3 weeks later because they thought I had ovarian cancer ( didn't) so everything was rushed. After all that ..forget it, no more surgery. I have a good prosthesis, it doesn't bother me to go flat at home when I'm not going out. Today I had a phone interview for long term disability from my job. Very nice man told me that I can collect until I'm 65, I just turned 58 on January 4. I told him I'll probably be gone by then..hurts to say out loud but probably true. Really makes you realize how much this $#*@ cancer takes from us! I see my friends on Facebook smiling and carefree, going places and having fun and I'm thinking about cancer every day. Had to shed a few tears when I got off of the phone.
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Lynnwood~I think part of my heart just dropped on the floor flopping like a fish out of water.when I read the ending ofnyour post I felt so sad also. You're not alone honey, I feel the same way. I don't do face book because people tend to always want to interfere with happiness. I don't want or need anymore drama, and I don't want people to look at me and say things like ahhhh poor girl got the dreaded BC, she looks like crap. I don't want to be the one who has cancer and can't do the things others do. I understand and feel like wrapping you in a big hug, it truly sucks more than any one word could possibly convey. I hate it more than I could ever express. It ruins lives....trust....feelings....emotions....loves....relationships!I am so sorry you have ever felt this way. I completely understand all to much! Much love~M~
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Lynnwood~I think part of my heart just dropped on the floor flopping like a fish out of water.when I read the ending ofnyour post I felt so sad also. You're not alone honey, I feel the same way. I don't do face book because people tend to always want to interfere with happiness. I don't want or need anymore drama, and I don't want people to look at me and say things like ahhhh poor girl got the dreaded BC, she looks like crap. I don't want to be the one who has cancer and can't do the things others do. I understand and feel like wrapping you in a big hug, it truly sucks more than any one word could possibly convey. I hate it more than I could ever express. It ruins lives....trust....feelings....emotions....loves....relationships!I am so sorry you have ever felt this way. I completely understand all to much! Much love~M~
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lynwood could you apply for social security disability?
I did it over the phone but had to be unemployed for 6 months before I could collect.
Tanya
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Tanya~ it's so awesome you can have them that close you can help with homework. I hope someday I can work on an science project with my grandchild. I was always good at them. Most the time the teacher would ask to keep it. At least I knew I could pass the 7th grade science again. Lol you're a wonderfuk grand mother, I wish I had been able to feel that closeness as a child. I come from a VERY dis functional family in about every way possible. Both parents are not too great, One had money One didn't. Now they are both old and miserable. Both not in real great health. Your children are so lucky to have you that close. What a gift that is alone. You're family is very special. I am envious, I have no good memories of really either parent, ones that Aren't horrible, but they were just miserable people. The only person that wasn't miserable was my DSF. He was and is an angel. He puts up with my mother. That's a tough bill there. I try to love her anyway in spite of what happened as a child. I wasn't there, enough in age to really understand what was going on. The others were , so they have spent their lives blaming others..... I am this way because of my parents they always said. Well to a point maybe. But we all know right from wrong. Sometimes I think people just ignore it, and just do whatever they want. To heck with morals. It's a shame. I have noticed it to only get worse as generations go on. Now. People don't even marry anymore, they live together and have children. Interesting world to bring children up in these days. With grandmas like you helping, They can only be incredible people!! Much love ~M~
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Tanya, I applied for social security disability and was approved. This long term disability is from my job, how it works is that between ssdi and their disability policy I will get 60% of my pay. Believe me, the process for my works disability is much more extensive then ssdi...so many questions and still not officially approved yet since December. Wouldn't you think stage 4 cancer is enough??? They want to know how often do you shop, clean, watch tv, cook, read,etc. They requested and received over 200 pages of my oncology records, hello??? Why would anyone who wasn't disabled have 200 pages of oncology records. I don't know how anybody can get away with cheating the system like I hear some people do with all the information they need. Emotionally exhausting!
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Lynne(Man)~Isn’t free a lovely word? Lol it really does sound romantic and wonderful. I hope you and DH have a roaring fire (that isn’t too hot of course, because we all hate our hot flashes) and lovely meal with your friends. I know you didn’t feel like going, but you’re feeling better and gotta do the good stuff before the chemo time comes around again. Drat!! Time for bed for me. Didn’t sleep too good last night. Hope tonight is better! Much love ~M~
Waving hi to Chelle. Where has Mae been? Hope she’s doing ok. Lots of people missing these days. Hope all is well for you all. Leapfrog? You ok too ? Nan 💔, still waiting.
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I know Lynwood and then after all that when I got my approval they said it wouldn't get paid until I was out of work for 6 months. And then another month, so 7 and then you get your first check. Sorry I asked the guy in the phone what happens if I die before I get paid will my husband at least get it?
Deep sigh.
Attaching a picture of my two grandchildren. Their father built them this igloo. They live in Rochester. That's the kind of parenting that they and I will remember forever!
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Tanya~ There are so many sighs to go around for us all tonight it seems. Sometimes it's all just too much to figure out, no less constantly be stuck filled with worry that never leaves us. I just hate what this does to us all.
That picture is precious. That innocent happy laughter and smiles. That is an awesome igloo. I wish my father knew how to build something that cool when I was young. But leaving your family ages 4,10,16,&17 will cause some problems helping with that . I love the fact that they are so happy and living thehappy little lives they should be living. Those moments are what make the world go around. Times likes that go so fast. Thank you for bringing a much needed smile to my face. Darling woman! Big hugs. ~M~
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Tanya, I also don't get how they make people wait for 5 months for money and 24 months for medical benefits!!! It just doesn't make any sense and so unfair. Your grandchildren are beautiful! Looks like they are having a lot of fun.
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Micmel and Tanya- don't be deceived! I am energetic about taking my grandson for skating/sledding, but I am not actually performing these activities myself. I can sit in car and watch the skating, doing crosswords or reading. I did these things well into my 40's, but am not fit enough anymore.I feel so strongly that he should have these experiences as a kid growing up in Maine. Tanya, I love the photo of your grandchildren in the igloo!!! It's terrific!!
Lynnwood-such a pain filling out those forms. Feels as though if you miss dotting an "I" or crossing a "T", they will deny you! Good luck getting through it. It is so hard not knowing how long we'll be around. Actually, nobody knows that, but we have MBC, so we know we probably have a shorter expiration date. Somedays, I can think of it practically, and other times I feel sad and terrified. Often, I say to self "but it's not today, is it?" and I tell myself to enjoy the moment.
Hope everyone is cozy and peaceful just now-may the force be with you-MJH
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lynnwood I started working when I was 14.
I'm 60!
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Tanya ~ who wants to work that long ??? That's amazing. You must have really loved what you did!! Wow that is a longtime, although I can't even remember turning 14. Teenage years are very hard but little did I know that my late fourties would be the challenge in my life.
Lynwood~ it does feel very surreal when you're at the doctors office and you know what they are saying,but grasping that they are talking about you, just never seems real to me. It's like the same dream that's fuzzy every time I think about going, I hear the voice and see the lips moving,but it's still just like yesterday my life started to implode. I have a reconstruction appointment on January 31. It was the earliest I could manage. THey just take forever to get you in to see anyone. February, I have XGeva shot and bloodwork, onc visit and follow up, palliative care doctor also In February, it feels to me honestly like I was just there. I hate how time flys, it seems. But when we think about us, and in the mention of expiration dates that are way to early. It makes it even go that much faster ! Good night ladies. Much love ~M~
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MJH~I was picturing you out on the ice, being Dorothy Hamil, remember her little bob hair cut? Too funny how much older I feel everyday. I am cozy now and my medicine is kicking i wanted to thank you ladies for each and everyone of you. I enjoy you all so very much. Sleep well. Much love☺️~M~
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Here it is 9:57 am and I just woke up. My DS has a job that keeps messing and changing the schedule after he has been off for a few days and he doesn't have access to the system to even see when it was changed! So they change it and he doesn't know it. So he made plans for all these job interviews for today and now they did it again to him. He was supposed to be in at 945 and he didn't even know It. I don't think that's a good way to Run a bank. Just makes no sense to me whatsoever!!
I feel like ever since I have been diagnosed. Everything, small or not problem I don't want to be bothered. I just want my kids to get their lives together!! And be able to finally be on their own. I just want to be able to live stress free as possible. My body just seems so weakened and is already tired and tomorrow isnt even here yet. Un realistic for me to say, I am ok with constantly feeling tired and run down and not capable of long day activities or long anything except naps of course. Somedays ladies I have to admit, as they were wheeling me down in the hospital to the surgical room, part of me said. “If I am not going to be ok, please just take me now". I honestly don't want to suffer and watch myself slip away into someone I don't even know anymore. That is just terrible. Too terrible for anyone. To have to go through it just makes my heart so sad and tired of feeling like my life is winding down,and there isn't a darn thing I can do about it, except suffer through and wait until the next blood tests comes, or the next scan sends you into a place only others who understand go. I am not really sure that going through all of this is even worth it. But then again, if we don't take the treatment, the actual cancer is ten times worse to feel in the form of pain. My breast tumor was horribly painful. These are scary times and I feel like some days I am just ok and others I'm not ok at all. But let's not forget what the people who don't have cancer say. Stay positive have a good attitude. Fight hard. You got this.!!! Uh no I don't I have cancer., and cancer has me. Much love ~M~
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