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

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  • MJHJAN1014
    MJHJAN1014 Member Posts: 708
    edited January 2019

    Loves, it has been too long since I have posted. It grieves me to read of everyone going through rough times.

    Parry- those weddings! How exquisite they were! You looked amazing and what priceless memories will always be with you. I see you are really going through hell right now. I want it to just go away. Period. I am holding you in the light and hoping you can have some peaceful moments during this.

    Gracie-hello. Sounds as though you are being" put through the ringer "also. How I hate to hear this. I am sending love and hugs to you.

    Grannax -I've been concerned for you on the AA. It sounds so rough. Being unable to eat anything stinks. They will need to alter that red gown, huh? I am in awe of the strength that you, and all of us, exhibit. I wish for this AA to become more tolerable for you THIS INSTANT. and I pray that it is kicking some cancer butt.

    Bighome -how nice to hear from you! I loved the photo of Skittles! I want to thank-you for your dear Thanksgiving wishes, which I did not see until way after the fact. Did I see that you are meeting with a new MO soon? I hope it goes well; sometimes just walking into a medical institution raises my anxiety level several notches. I hope things are easing for you as you face challenges in your personal life- it seems to never end, huh?

    Micmel- what to say? You are a dear, dear human being. I feel joy in reading about the love between you and your sister and your Dad. So healing. How exquisitely painful it is to watch a parent wither away; end of life issues are unique and it seems we are not always good at it in our culture. My 97 YO father in law just died, and his children cared for him so lovingly. It seems to me we should celebrate the lives of those dying in subtle ways each day. Sorry to hear about your pesky back-back pain sure puts many folks in the dirt in a hurry, and it's hard to treat.

    Lynne(Man)-my heart continues to break for you. I think of you often and pray you are holding up. Know that you are loved and supported from a distance.

    Lynn(50's)- I am thinking you are in a warm place and I hope you are enjoying every minute. I was in Sarasota for 5 days earlier in the month and it was glorious! i am also thinking that you have a port now? and starting Taxol soon? Hope you are adjusting to that change-I know it takes me quite a while to process treatment changes. My thoughts are with you.

    Tanya- so you had quite the giddy car ride? Makes me laugh to think of it! You are such a wonderful soul and I love your spirit!

    Mae- love how you always weigh in with your honest, witty remarks! You keep us all smiling! Hope you are well! By the way, would you please "calm the $&%% down!"

    I have been doing well. Still holding my own on Xeloda, though tumor markers have hit bottom and are rising very slightly. MO keeping eye on them and is concerned about the possibility of one cell line becoming drug resistant since tumor markers have not returned to normal. Who knows? Having follow up liver MRI mid February so will know exactly what's going on there. Hand and foot syndrome continues to be a challenge. I asked MO what would probably be next for me. It may be Doxil, which is one a month IV. It is also hair sparing. Hopefully not for a while.....

    Things are stable with my family. My dear little grandson has his times-it's hard growing up! He is so spirited and active. Can't imagine life without him. My DD is doing better and better with reintegration into life. She will start her radiography school in September after successfully completing the prerequisites. Hopefully sending DH off to New Zealand for 3 weeks in March. We have friends that will be there and he could stay with them; he has enough miles accrued to get ticket.It has been a lifelong dream of his-so I say go for it. I told him to leave me an ample supply of firewood and hire someone to plow the driveway. i will hold down the fort! Not possible for me to join him with our grandson here; my daughter not capable yet of assuming his care for that long a period.

    I will post a few pics for color and diversion!

    To ALL of my dear MBC sisters, you are always in my heart. May the powers of the universe be with us as we struggle with this "Emperor of All Maladies"(book title). Love, Mary Jane


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  • MJHJAN1014
    MJHJAN1014 Member Posts: 708
    edited January 2019

    image Pretty Amaryllis!

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  • MJHJAN1014
    MJHJAN1014 Member Posts: 708
    edited January 2019

    image I have roots on both sides of the Mason/Dixon line! I made this 50 gallon drum of Gumbo upon returning from Florida!

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  • MJHJAN1014
    MJHJAN1014 Member Posts: 708
    edited January 2019

    image In Leesburg, Florida with my wonderful Aunt Aggie, who will turn 100 first week of March. She and my uncle homesteaded their 40 acre farm in the 40's. She has lived there for 70 years. She was a school librarian.

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  • MJHJAN1014
    MJHJAN1014 Member Posts: 708
    edited January 2019

    image Ok, kind of boring, but I revamped two of these signs by repainting the letters. Actually turned out to be a fun project.

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  • MJHJAN1014
    MJHJAN1014 Member Posts: 708
    edited January 2019

    image last but not least, I get to try new recipes when desserts are needed for Scout events. These are chocolate cupcakes with a strawberry buttercream made using freeze dried strawberry dust. They were a hit at the supper and they made $600. Enough to pay for each scout to camp out at the Boston Museum of Science in April! I slept for 2 days after it was over !

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  • MJHJAN1014
    MJHJAN1014 Member Posts: 708
    edited January 2019

    image Forgot, there was a great Antique car night in downtown Leesburg, Fla. when my sister and I visited. Had a lovely glass of wine with my cousins at the "Two Old Hags" wine bar!

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  • Micmel
    Micmel Member Posts: 9,450
    edited January 2019

    MJH~All I can say is wow! You make me feel so pathetic!!! It's amazing to see all you do. Those cupcakes make me really really hungry. Cupcakes are a weakness. I want to gobble them up like now! Awesome car! My son would love that show! I think your sign is helpfully creative. My DH was a Boy Scout scout master for like 5 years. It was amazing to see the dedication and tasks each individual scout has to complete to advance in rank. I watched my step son get to eagle. It was something else. These boys work hard hard!!! I can't belive your aunt will be that old my goodness what have I done wrong ??? She's amazingly young looking. She deserves the best! 🌹 to her! Love seeing your smiling face here. We missed you! 💐💐💐 send some of those cupper cakes my way please !

    Be safe and warm! Adorable grandson btw. Eating all my cupcakes. Jk! $600 amazing ! You go woman! Much love ~M~🧁🧁🧁🧁🧁🧁

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  • JoE777
    JoE777 Member Posts: 628
    edited January 2019

    Ditto on cupcakes. Gotta show my hubby the car. He does a lot of car shows. We have a 57 Chevy truck that he's restoring.image

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  • MuddlingThrough
    MuddlingThrough Member Posts: 726
    edited January 2019

    Great post and photos, MJH! I admire your baking and sign work and visiting and grandson! You're so busy. I'm going to try to make some good snacks for the super bowl. That's about it, ha ha!

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  • Micmel
    Micmel Member Posts: 9,450
    edited January 2019

    Joe777~My son is going to flip out when he sees that vehicle. Very sweet color. That is so awesome to see someone Doing what they enjoy! I would like To have a spin in that bad boy!thank you for sharing !! Much love ~M~

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  • runor
    runor Member Posts: 1,798
    edited January 2019

    Micmel, we can go on the road and MJH can bring cupcakes! I'm in!

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  • Micmel
    Micmel Member Posts: 9,450
    edited February 2019

    sigh super big sigh! Sometimes it really annoys me that people just don't listen to me. I've been with my hospital for years and years. Even before my cancer. While visiting my father on Saturday my step monster was talking about getting him into a short term facility until her arm is better. I said she should look closer down towards my home because the area they live in is quite expensive and they would never be able to afford the facilities in that area. (I already knew this all because I researched it all before for my mother who also wants to live closer to me 😦😞🤫😳🤯🥺) so my father was moved and he hates it. He's crying wanting to come home and scared that there are people he doesn't know.

    It makes me very upset. I cannot help him. I can help him if they move him closer to me. But do I want that stress on me. ? That means all calls will come to me first and he will connect the town he is in with where I live. . He comes and goes with sharpness. He knows my town. I called and filed to have him moved someplace else. I filed a complaint against the shitty social worker that represented hospice at that meeting. What a joke. She should not be in the position she is in. I am making it a personal featof mine to make sure my letter will be going into her file. I'm not playing games here. I'm trying to get my dad changed to my hospital. That way I'll know his surgeons and doctors and I want him to be assigned to my palliative/hospice team. My doctor is wonderfully amazing. I adore her and I see her Monday I'm going to see if she can't pull his records. Grrrr I'm so annoyed.

    Love to all~M~

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  • Micmel
    Micmel Member Posts: 9,450
    edited February 2019

    Grannax~ thinking of you and in your pocket ! Hugs !

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  • Tanya_Djamila
    Tanya_Djamila Member Posts: 1,378
    edited February 2019

    Good evening ladies

    MJH those pictures are wonderful. What a way to catch up with months. I love cup cakes antique cars and visits to anywhere!

    Grannax I’m looking forward to your Feb 16 fashion show. I pray you feel better after the AA.

    Parry I hear your concerns and I’m agreeing with all the positive speak here. I just want you to know that I hear you and sometimes I just don’t know what to say.

    Micmel good for you advocating for your dad. Navigating through family poop piles is terrible. I let all my siblings make their own decisions about this kind of stuff. I have to live with myself after all.

    Have a good evenin all.

    Can’t believe it’s February tomorrow.

    Tanya

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  • Micmel
    Micmel Member Posts: 9,450
    edited February 2019

    Tanya~Thank you very much for those words. I can’t physically make a difference. But I can make the calls and talk to people . I don’t like that people try to hide from their own doings. I didn’t like her that day. I callled her supervisor. Bad bad treatment. He’s gotta be moved. Stressful and articulate weather here. Yuck! Sleep tight everyone. Lots of blankets snuggle your pets. Love you ladies !
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  • Micmel
    Micmel Member Posts: 9,450
    edited February 2019

    it is official my dad is coming to My townto a facility 4 miles from me. He's being moved today or tomorrow. I find it amamzing how things come full circle. It's just crazy. I called this facility last night and then this morning called my hospice/palliative care group and they got his records and maneuvered a bed for him with 24 hours. I have been with this hospital for a long time. They are good. I know basically everyone. I know a lot of doctors and nurses also. They are so helpful! They made it happen! So now I won't have to travel as far to see him and won't be so worn out when I get there. He will be 4 miles. Away. It's so weird how things play out sometimes. Boggles the mind. But at least I can spend time alone with him. And not have to deal with anyone but him. I can read to him. Basically rediscover who my dad is now. Weird weird weird. Can't believe it honestly. Hope all is well !

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  • JKL2017
    JKL2017 Member Posts: 437
    edited February 2019

    Hi, Micmel. I've been on vacation and just now catching up on BCO. I am thrilled that you were able to move your dad! You are a force to be reckoned with, girl!!!!

    Glad you and your sister have reconnected and that your girl power team is now taking care of your father. No matter what has happened In the past, you will be glad that you have made this effort on his behalf. No matter how he acted previously, it is clear that he has always loved his "Boo" and that you two have something that no one could destroy. Cherish your time with him and know that you are giving both of you a tremendous gift.

    I'm keeping you both in my prayers.

    MJH and Jo, love your car photos. I have a SIL who is a car guy (he currently has 3 old beauties that demand most of his free time) and I know he would swoon over those pics!

    Tanya, your story made me laugh out loud! Don't ever lose that sense of humor!!

    Parry, you were a beautiful bride, almost as beautiful as the story of your relationship with your very special DH.

    I first came to this thread after exchanging PMs with Micmel but I keep coming back because you are all such amazing, inspiring women. Thank you for that.


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  • Micmel
    Micmel Member Posts: 9,450
    edited February 2019

    JKL~ What a wonderful thing to say to me. I need to feel power sometimes. It's very upsetting to think that all this time has been lost but I don't mess around at all. I knew all about the area places because I've researched them all. They said last night he wouldn't talk to anyone and curled up like a bawl and cried. That was motivation for me to call the palliative care/hospice group and ask my friend who is a nurse to pull some strings to get his bed arranged. She did it for sure. I feel glad to be able to help in any small way. I knew I would be able to get someone working on moving him. They already called me with his room number. Relief. I worry he won't like it there either. I am going to visit everyday. Hopefully knowing that my kids will also be coming by a lot. That will also make him feel us all around. That can only be good. Boy I'm beat. Lol

    JKL I hope you had a lovely vacation. You deserve it my sweet friend. So glad you're back safe and sound. Thanks for always keeping in touch. It means so much!

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  • Donnabelle
    Donnabelle Member Posts: 198
    edited February 2019

    Hello lovely ladies -

    I don't post very much, but I found this thread and am amazed at how caring and compassionate you all are for each other. I hope I can join you! I am feeling in the need of some support!

    My brief history: Discovered a tumor in my right breast in March of 2013. Had a mastectomy, no lymph node involvement. If not for a high Oncatype score of 32, all would have been ok, but because it was so high I did 4 rounds of Taxotere/Cytoxin and then was on tamoxafin for almost 4 years when I felt a lump under my ribs, right in the spot where you would do CPR. Test after test and the bottom line was I had large liver mets and also lung and bone mets, which were small. This was in October of 2017. Before both of these diagnosis, I was under a lot of stress, particularly the Stage IV reveal, so you can sign me up as a person who believes that stress can play havoc on your health.

    Since then I have blown through 3 lines of treatment and am currently on Carboplatin and Afinitor, which I think is a weird combo from what I have read, but my MO is innovative and I trust her completely. Now, I am nervous, which is unusual for me, I pretty much roll with the punches. I have a PET scan on Monday and an appointment with the MO on Tuesday for the results. I don't think this is working. I can feel that my liver is enlarged, it feels like it wants to jump out of my body. Also, if I poke around, I can feel a hard lump in the right lobe. And my tumor markers have almost tripled. I'm worried that I will have to change treatment again, and that I am failing at too many too soon. My MO says my mets have "attitude." Sigh.....

    I am keeping you all in my thoughts with wishes for positive news for everyone. If any of you can spare a moment to send positive mojo my way I will love you forever!

    Donna

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  • Parrynd1
    Parrynd1 Member Posts: 408
    edited February 2019

    Welcome Donna. I’m hoping your scan goes well and that maybe you are just having a SE with the combo you are on. My MO calls my mets her problem child out of all her patients, lol. I’m gonna tell her they just have attitude from own on though...maybe we can approach it as solving this attitude problem.

    Micmel I’m so glad to read your news about your dad. Good things do happen :) I hope your back is feeling better too.

    Thanks for all the support from everyone. I was feeling very down and discouraged. I thought we would have found something that works almost a year into it so that was really affecting me. Plus the new mets. Also this cold has been the worst I’ve had. I hope everyone is staying away from anyone coughing or sick.I hope you all are well. Lots of hugs your way.

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  • Micmel
    Micmel Member Posts: 9,450
    edited February 2019

    Donna~Welcome to our little slice of home. Pull up stool and make yourself at home. We hope you have big pockets because we usually all jump in and tag along to scans and bloodwork and tests for the support it brings. We are known as team FU Cancer. Parry actually named our team. We like to be a loving caring family and we are so glad, should you decide to become apart of it. I am sending all my good thoughts and feelings your way for sure. Will be with you on Monday!

    Parry. Love you darling. There is something that willwork!! They better find that like yesterday !! Hugs beautiful lady!!

    Much love ~M~

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  • illimae
    illimae Member Posts: 5,710
    edited February 2019

    Welcome Donnabelle, I hope you’ve got big pockets cause we’ll be in there during your PET, snacking and chatting.

    Parry, thinking of you and hoping for a quick recovery. I had allergies turn into a sinus infection a couple months ago and it was horrible, really brought me down mentally and made everything so much more difficult.

    Big hugs all around ladies and Daniel

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  • Artista964
    Artista964 Member Posts: 530
    edited February 2019

    yay Micmel! Glad it worked out and quickly!

    🙏🏻❤

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  • runor
    runor Member Posts: 1,798
    edited February 2019

    Micmel, I got goose bumps reading about your dad. The world works in mysterious ways.

    Donnabelle, you will find plenty of support here from others who know the ropes. Sad that anyone has to experience any of this but grateful for those so willing to share.

    Everyone else, I read often. Hugs to all.

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  • skitzblitz
    skitzblitz Member Posts: 153
    edited February 2019

    Donna-welcome To the thread, you will get a lot of info from many great minds here.

    I have stubborn liver mets and blew through two treatments pretty fast. I could feel my liver as well, but I am thin. I started ac (red devil) chemo and have done five rounds so far. It took four treatments of ac before I could tell my liver wasn't as hard and pronounced. My liver was pretty full and the mets are dying off but still need more.

    You still have a good amount of treatments to try yet and trials are also good to look for. It's hard not to worry, we all do. Best of luck on the scan!

    Check out the “how are people with liver mets doing” thread as well. I follow that one and lots of good info there too

    Micmel - you go girl! Glad you used all your power to move your dad near you!! You will be glad that you had this time together. I do believe everything Happens for a reason.

    Sarah

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  • Tanya_Djamila
    Tanya_Djamila Member Posts: 1,378
    edited February 2019

    welcome Donna

    Sorry you have to be here but glad we’re here for each other. On days when no one Knows what to say in the non cancer world someone will listen and carry you through. Fear and anxiety are a part of all of this too but our team will help you through that as well.

    I also go on the thread ibrance there are a few women there who have had several treatments and are amazing scientists doctors I don’t know. (Cureious, gumdoctor, patMGC). Go there and ask about your current and possible upcoming treatments.

    Micmel 4 miles away!!! Wonderful work my dear.

    Parry I hope that cold let’s up soon. What are you taking for it? Let me guess everything. I usually load up with vit c and also take that vicam which is loaded with zinc. I think naturally you can find zinc in kiwis. I also eat garlic raw until I’m not fun to be around. I slice it up on my popcorn with butter. Tea honey lemons. Soups. Did I leave anything out ladies? Take care and get well soon Parry

    Have a good weekend all

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  • JoE777
    JoE777 Member Posts: 628
    edited February 2019

    Illimae, apologizing for misspelling your name when recommending you to a new girl. Couldn't scroll much that day because of motion sickness. Hope she found you.

    Loving the THE BIG POCKETS. I start radiation at 1:00 Monday to knock down some stubborn mets in my lower back. I felt pretty good until two days ago and all of a sudden my right hip hurts enough to start the hydrchodone again and grab the cane.

    Hoping I get the quick relief like I did this time last year. The first shot hit the sweet spot and I could lift my leg to walk and it crushed the pain.

    Hope you girls in the frigid parts are warm and no one floods in the big thaw.

    Here in the south Houston area it is drab and damp but I think I'll stand out on the front porch and breathe some slightly polluted air and enjoy my pansies. Hugs to all especially our new girls. Hoping we can lift you up on your down days. J

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  • GracieM2007
    GracieM2007 Member Posts: 1,564
    edited February 2019

    Hi everyone!!! Sorry I haven't been posting much, just too much right now!

    Micmel, I can't imagine how high your stress levels must be, but am so glad you got your Dad moved to a closer place! Can't help but think that is going to help both of you a lot!!! Hugs!!!

    Donna, this is a great group, welcome!!!


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  • Donnabelle
    Donnabelle Member Posts: 198
    edited February 2019

    Thank you sweet ladies for the warm welcome. It helps to know that there are others out there going through similar challenges. It's not always easy to talk with friends about cancer, and I don't want to be thought of as only having one note that I can sing (and it's all about treatment and chemo and fatigue)....you get the picture. So I never bring it up, and try to answer briefly when asked. As for family, I tend to gloss over things, especially with the DS and DD, because I don't want them to spend their days worrying. Of course, DH gets the brunt of it, but he is eternally optimistic and that helps me.

    I will be comforted knowing that you all will be in my (extra-large) pocket on Monday for the PET scan and Tuesday for the MO appt. Since my pocket is hosting, I will provide chocolate covered strawberries and champagne, lol! Enjoy!

    Micmel, I am so happy to hear that your father will be close by. It will help both of you immeasurably, I am sure of that. And your strength in advocating for him is so impressive. Thanks for welcoming me in.

    JoE777, my PET is at 10am, so I will be ready to jump into your pocket by 1pm. I'll even bring a little left over radiation along with me!

    Gracie, Tanya, Skitz, runor, Parry and mae, thank you for your welcome and advice.

    Let's all have a good weekend, and although I live in CA now, I grew up in New England, so I just have to say......GO PATS!!!

    Donna

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