My Husband, My Life, My Love, My Family, My Cancer
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Claudia~whenever I leave from staying with Chief, I am exhausted. He's a handful, I am so happy that my dogs are bigger , I can't worry about every single thing that they put in their mouths. It's anything and everything. I took him outback at his home today instead of taking him with me in the van. It was too muddy and cloudy and chilly. The pond would have had puddles in the path , he loves puddles and anything that resembles a stick. Pretty bad soon though I Am not sure how long I'll be able to take him with me. He's strong. I don't want him pulling me and me falling. That wouldnt Be fair to the dog or my sons best friends. They trust me with him. I am thinking I am going to have to stay with him at their house because of the fence. Then I can see him and not worry about falling. I just love animals. I know the ibrance fatigue, how many months do you have under your belt now? I am convinced it's accumulative. I believe Tanya is also on it, I wonder if she feels the same ? I don't know how you do the animals. I think you're amazing to still have them. What did that stranger want anyway? That's creepy! Hugs my friend ~M~
Thinking of you Mae, I believe yourscan is coming up soon within the hour. You're on my mind.
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Micmel, Either 25 or 26. I believe 25. I know a dog is not the answer. I would never survive puppyhood. I need to get curtains on the Windows. Normally, I don't answer the door if I'm not expecting anyone. But our main living area is open and we don't have curtains because we don't have any close neighbors. I guess I will have to get on that. Our bedrooms are the only rooms with curtains. We have been talking about an alarm system. I think its time to stop talking and start doing.
Thinking of you Mae. Micmel and I are standing next to you making funny faces!
Claudia
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Claudia~ Did you answer the door? I love the fact thatyou have no neighbors around you. I'm jealous!! I grew up on two acres and I loved it. I had my horse Fancy, she was something else. My mother bought her for me when I was a young teenager around 13! It was always a lot of work every single day. It was also very expensive even back then to have them. I hated the freezing mornings heading up to feed her in the freezing temps and snow. Mucking the stalls everyday and changing the dust and hay. My back hurts thinking about it. I loved the horse, but now that I think back, my mom did most of the work. I think I am going to tell her that next time we talk tomorrow! Curtains sound like a great idea. Don't take any chances please!! I already can't wait for bed. I feel like a useless person most times. Week off of ibrance, hope my mouth improves in this week. At this point I don't even want to eat. It has to be bland and soft, no chips or hard crunch at all. It's just becoming so annoying. To think this is my life from now on .... no matter what. I have cancer at the end of everyday. Rest up Claudia. And everyone else. Will be waiting to hear from you Mae! Much love ~M~
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Tanya, I enjoyed seeing the pictures you posted. It must have been so nice to spend time with visiting family. I don't think I would have been brave enough to hold that alligator even with his mouth taped shut.
Mae, that pan fried chicken sure looks good. I ate way too much while I was away, so now I have to eat sensibly again. Unfortunately, I enjoyed eating whatever I wanted much more that eating only what I should.
Chelle, WOOHOO for those scan results! NED? Oh my goodness, my friend. That word is music to my ears. I am SOOOO happy for you. You and your DH much be so excited, happy, and relieved. WOOHOO! How is your DH doing? Have you two made a decision about his retirement? You two hold a special place in my heart, and I continue to pray for both of you.
Lynne, I saw that snow yesterday, and I was not smiling. I am just not ready for it. November really snuck up on me this year. I can't believe that Thanksgiving is next week. I am looking forward to it.
Micmel, That oral contrast is awful, isn't it. I used to have my scans at a facility that gave contrast that was added to bottled water. It was pretty much tasteless. I picked up two bottles of it the day before my scans and took them at home before my appointment. They didn't bother me. Now I have those nasty thick drinks that they have the nerve to calls smoothies. Ha! I suppose they are given for a reason, and I try to keep that in mind. They serve a good purpose. I hope you have your scan results soon and you join the NED club with Chelle. As far as Ibrance is concerned, I have been lucky. My dose was lowered to 100 mg after the first month because my neutrophils went wayy below the acceptable range. Since then, I really haven't been bothered by fatigue. I think everyone is different. My son has a theory that I am just too stubborn to have SEs. Lol.
I have a busy week - today was babysitting for 2and 3 year old granddaughters, tomorrow is grandparents' day at my grandson's school (in Lynne's hometown, btw) then visiting mother-in-law, Thursday and Friday babysitting again, Friday night traveling to NY state for another grandson's Confirmation on Saturday, return to NH Saturday night, after church on Sunday go to Massachusetts to watch yet another grandson's basketball tournament, return home Sunday night then drive to Boston Monday for dh's scans, come home after that, then return to Boston Tuesday afternoon for scan results. I have to squeeze grocery shopping in there, too.Wednesday, of course, I will be baking for Thanksgiving. I am hoping that one of the things we will be giving thanks for on Thursday is good result for dh's scans. I am nervous. DH is not!
I hope everyone gets good news.
Hugs and prayers to all from, Lynne
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Lynne(50's)~I remember when I went to Hawaii I needed a day or two to get myself back to the regular time. What a trip that must have been. Why is it that good times go so fast, and something hard seems to take forever? I never really payed toomuch attention to time, as I have since diagnosis. I always looked so young and healthy, I was afraid to age. Now this past almost two years have aged me scarily what seems like 10 years. Treatments are hard on us. Our skin, our hair, our nails, our bodies, our minds, it's just a rough thing. Sounds like you have Some busy days coming up this next week! You're amazing. Travel safely and I hope you enjoy every single second. Sounds like they are very lucky young ones to have such a devoted grandparents. Will be thinking of your DH and his scans also! Sleep tight! It's going to be a chilly one again tonight! ~M~
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I can't believe it is thanksgiving, I was reading Lynne's post and it hit me. Next week is thanksgiving. I have done nothing at all! DH sister and her significant other are coming. We get along very well. It's nice but everyone has such busy lives. No ones sees each other as much as maybe people would like too. What I don't like is associating the holidays with scans. My birthday is in May which falls in line with my six month scans. So it's always those blocks of time I live by. I am hoping this time, when I see him. He says he doesn't need to see me again for six months! Then I'll do a cart wheel I know i may break a hip, but it will be worth it. ~M~
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Thre months to the day after our 30th anniversary, my husband died of cirrhosis after 10 days in ICU. He had been drinking secretly, apparently since my initial dx, hiding it so well that I only suspected but wasn't sure - until he was in the emergency room with a blood alcohol content of .46. I am devastated. We MBC think we will go first, and here I am left behind. Not only that, but he made no preparations, and left our finances in chaos. He said he couldn't bear to watch me die - so he made me watch him. And it was not a pretty sight.
I loved him so much and he's just gone
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Magda~How my heart breaks for you. You're so very correct on how this MBC makes us feel like we will be the first to go. You were obviously his person, or he would not have been so distraught. I am so sorry that is what happened to you. He could not imagine living this life without his best friend in life. I have said that to my DH every time we get on the topic. I always said I had to go first because I do not want to be without him one day. He said what about me ? I said you'll be old and grey and need a walker, by the time you go. He said how do you know that. It just proves , we know nothing, until it's thrust upon us. Please don't be alone. Come here and get to know us and build some friendships that can help you, by just reading the words here, from some wonderful women. You're a good woman, don't fade away and hide, let us help you. You can always know that on this thread, there is always an ear. I am wrapping you in a big hug. I am so sorry for what you have went through. I am also sorry he left the things in dissary for you. Clearly, he was a shattered man. One day at a time sweetheart! Start by finding your birds to flock together with. You're not alone., we are always here. ~M~
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Magdelene, I am so sorry for the loss of your husband. I could feel the pain in your post. So much loss for many of us..people, jobs, finances, body image, sense of security. Not for the faint of heart. Micmel I so feel you about the scans and their schedule. I see the onc on Dec 19th and I know she will want a scan. Good or bad results, I don't want to deal with the anxiety of it all so close to Christmas. This will be the first Christmas in 15 years that I don't have to worry about my work schedule and I would like to try to enjoy it. I'm getting a redraw on Monday to recheck my tumor markers which went up 15 points last month, I might just ask my onc to order the scan sooner then later to just get it over with. Just feeling so down and so tired of all of the uncertainty.
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Lynnwood~ I agree with you that all of the uncertainy drives someone crazy. I wish through all this medication they give us, they could actually just kill the damn cells. Sometimes it makes me so mad we haven't seen a cure for cancer yet. All the money in the world, thousands and thousands of doctors cant pull a cure out of their hats. We must be doing something wrong. Someone needs to start saving lives of women and men. Cancer takes too many lives and makes trying to live everyday almost a feat too high for some of Us to climb just to get out of bed. My week off of ibrance, i would think I would feel more strength and energy! No so much. I also have no interest in food! All of this is just so shitty, i still have to convince myself that this is real. And I am now a stage four cancer patient. Like how does that even happen? Just tell your onc what schedule you want to be on. Just tell him, I would like to wait till after the holidays. I wish I would have done that. It's all too much to deal with most days anymore.
Mag~ I am thinking of you and hoping you can feel some strong good thoughts from me and from us here. You need support and a place to go that someone is always listening. I like to think this thread is that. Of course in between three naps or so. You're really not alone, we all struggle with different things. I hope that today, you find a little ray of sunshine that's just for you. Hugs for all ~M~
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ok guys ~ got my results back today from my scan. She said I am still Nead! Everything looks very stable and there are no new lesions or spots or anything. No organ involvement, and no active disease. She also said some of the bone mets look like they are dying away. She was thrilled. Now I can exhale for maybe another six months. I have to see onc anyway on nov 24 for more renewals on my Ibrance.! Hoping the rest of the scans keep comming back with great results for us all!
Lynne(Man) and Mae you're both on my mind.
Much love ~M~
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Magda, My heart is just breaking for you! What a terrible loss for youI I am sure, after so many years together, this is especially rough. Whatever anger you may feeel, please try to temper it with the knowledge that we are all inherently flawed human beings. If you can, reverse your thinking. Instead of focusing on your loss, remember that this is his loss also. He is going to miss out on your future together. That is just so sad to me. My Dh and I have been together 29 1/2 years. I cant even begin to imagine how devastated Iwould be to lose him. Somedays, I just need to hear the sound of his voice. Micmel is so correct. You have come to the right place. We are all about families and we copletely support each other. You can say anything you are feeling and you will never be judged here.
In regards to your huge mess to deal with, do you have any family or close friends who can help you with the mess? If so, please ask them for help. If there is no one you trust, reach out to whatever type of service you need. I know you are grieving, but you need to take care of you! You cant undo what has been done, but what you can do is make sure you are in a good place financially. If you need help or just have questions, please feel free to pm me. In my past life, I used to go into companies with no bookeeping system in place, records either a mess or non-existent, and get them up to date and organized, with an easy system for them to follow in the future. Very challenging, but extremely rewarding.
The most important thing you need to remember here is to take care of you! I cant stress that enough! If you need to vent, come here, or call a close friend or start a journal, but get those feelings out Reach out to anyone and everyone who can help you. You have suffered a devastating loss and you need support. What about your cancer center? Do they have a therapist you could speak to?
Hugs and prayers,
Claudia
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Micmel, Doing the happy dance for you!! Lynnewood, I feel your pain. My scan is on Dec 12th. This is just wrong to do it so close to the holidays. Holding your hand in support. Hi Mae, I hope all is well with you. Keetmom, how did your father do in surgery? How was your last chemo? Feeling better, or are you feeling miserable? I hate this for you! Lynne(50s) how are you doing with this cold weather? What a shock to the senses to come back from the balmy temperatures in Hawaii to this. Lynne(man) any scan news? Tanya, stay safe down there, ok. Anyone I may have forgotten to mention, no all of you are in my thoughts and prayers, each and every day.
I am making a big pot of chili for dinner tonight, and some cornbread. Yes ladies, the cold front has come to Florida! Brrrrrr.....
Claudia
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Claudia~ I adore you. You're such a sweet uplifting kind woman. I'm so glad you're a part of this family here. We really do support each other don't we ? Nice group we have. Much love my friend ~M~
Keetmom~ ?? Starting to worry my friend. Hope all is ok with you and your father. You're in my thoughts for sure.
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Micmel, CONGRATS on your scan results! What a relief you must feel! Couldn't ask for any better results then that!
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Well, I really messed up today. I set my tablet on my cookbook, it said off the table and hit the floor! The screen shattered, and now I can't get in it. Arrrgh...not now!! I have no patience with my on-screen keyboard on my other, much smaller and older tablet.
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lynnwood~thanks darling. I really appreciate it. It means so much. It's a scary business as we all know. I'm thinking of you and your blood re drawl. I'll be sending good vibes your way!!
Claudia~ oh no!!!!!!! I am so sorry that happened. Something like that can just set me off. Especially if it's one of the only things you really use everyday. Grrrrrrr. I hope it can be fixed, and not at terrible expense. 🙁 😞 It's always something it seems.
I went over to get my grand puppy today again. When I came in, there was poop all over the cage and his toys and a little on himself. I had to clean the entire cage. Remove the nasty blanket and every little hidden treasure in each and every crack in the cage. It took forever, then we went to petsmart and bought new toys to replaced the crapped soaked other toys. And then a walk around the pond near our house and he watched the geese. I stopped at home and had DD grab an older blanket that we don't use anymore. So I think three hours later, I am home and i am very tired. He wore me out! I mean I can't wait to sleep lol wow really worse than an infant! Much love to all ~M~
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my baby snuggling with me today before our walk around the pond. It was a glorious day, sunshine, clear skies, and clear scans. I want nothing more than for us all to have clear scans. That's my wish for you all ,much love ~M~0 -
Magdalene, I am so sorry for your loss of your precious husband. I am lifting you up in prayer and hope that your heart heals from the terrible pain you feel right now. It sounds like your DH could just not bear to lose you, and he took desperate (albeit unwise) steps to avoid the agony he imagined he would suffer. I hope you can someday see beyond the chaos he left and the pain he caused and concentrate on those good memories you and he shared for 30 years and 3 months. It sounds like you shared a special love for each other. I hope you have family and friends surrounding you now. We are also here for you -to try to comfort you, listen to you, and give you support. Please take time for yourself. Take time to grieve. Do not neglect your own needs. Do not forget to eat, to sleep, to take your medication.
Hugs and prayers from, Lynne
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Micmel, That is wonderful news about your scan results. So you are still NED! Woohoo! I am doing the happy dance for you. Now I want you to relax and enjoy the holidays. I realize that Christmas isn't your favorite holiday. Don't think about the gifts or the stress. This year I want you to soak in every moment of the day with your family. Your children are quickly coming independent adults, and you should focus on the special family time. Put aside the tension around you. I love Christms, btw.
Claudia, I am not enjoying the cold weather at all! We were sitting in 84 degree weather a few days ago, and now it is in the 30s. We have gone from shorts and sandals to long pants and winter coats. Some of the ski areas are opening this week.
Hugs and prayers from, Lynne
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MRI results are slight decrease in lesions, so far (I'm good with this because stable and shrinking are acceptable and tend to continue with time) and no new lesions, yay!
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Mae~ 💪🌷🌹🌹🌹🤗🤗⚡️🍹🍹 very cool. So happy to hear that. Shrinking is what we want to hear. Thank goodness! It's been a pretty good day. Sending you high fives and drinks all around! Much love ~M~
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Lynne(50's) thank you very much for the kind words I am breathing a sigh of such relief. We need everyone's scans clear and we need to keep all good results going. I am going to try to enjoy this Christmas. I guess part of me couldn't see past this scan. Now that I have that taken care of and have this wonderful news. I can maybe take a deep breath and enjoy loving my husband. Thanks to everyone. Big hugs ! ~M~ We have a few December scans coming up. We are going to continue our pattern!
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Wow, great news for you both!!! Am so happy for you Mel and Mae, shrinking and Ned is wonderful news!!!! My scan is next week, praying I’m still stable, but those rising tm’s scare the heck outta me!!!
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You ladies are so kind to welcome me into your circle. Believe me, I am rarely alone! My cousin, who is a very vigorous 80, has lived with us for 6 years and takes very good care of me. My biggest challenge with the financial/paperwork mess is that I'm the one that has to make the phone calls. Most places will not accept a proxy at least without power of attorney, which also requires a phone call/appointment/meeting with the estate attorney. I am simply hamstrung by this fatigue, complicated by interrupting waves of grief.
The following is a bit long, but I wanted to share with you the amazingly delicate way my husband's eulogist and long time friend explained what led to his death. He is a theologian so it's a bit deep in places. It was originally written for my facebook page when DH was in a coma, and revised for his service program.
Targeted for Destruction – Downfall of a Good Fellow Soldier of Christ
While Tolkien's Elves ironically termed mortality as "the gift of men," the Apostle Paul describes death as an enemy, to eventually be destroyed in the light of eternal life and truth of divine love. Thus do Christians hate the devil, the father of lies and aboriginal murderer (John 8:44). Within this larger warfare we lament the demise of our dear friend, Christian brother, and most beloved husband David.
Although all are imperfect with many faults, David seemed in some ways too good for this dark world, which he brightened at every point he touched it. As his long-time friend and fellow labourer in the fields of the Lord, I saw him wield his ministry upon the dramatic stage where I met him as my director. In this sphere alone did David touch thousands of lives for the better. Then he strongly supported my bid to re- enter the academic arena in hopes to make contributions that will in that way build up Christ's kingdom. And many others will testify to other such fruits born from David's obedient love and selfless giving acts. Truly, he has long been a "good and faithful servant" (Matthew 25:21).
For such reasons the enemy of our souls craftily abused even his deep and abiding love for his wife in order to ensnare him in despair– –a tactic that has reduced many a good person in the history of this present darkness in which we must abide as best we may for all too short a time. Succumbing to the subtle temptation to hopelessness, David inherited (we think) a predisposition to alcohol abuse, which was apparently the concealed weapon by which he was isolated from supporters and led, despairingly, to seek escape from this world of woe.
Suffering general failure of major organs––liver, lungs, kidneys, heart– –David was kept alive by machinated methods in a state of induced coma, unresponsive, yet loved ones––friends, fellow-workers, family from afar, his everlasting helpmate –– all spoke to him, just in hopes he might hear. Eventually he came around enough, thankfully, before the end to bid farewell to his wife, for whom we pray unceasingly in this dark hour.
Let us all pull together in loving support of one another, trusting to "the Shepherd and Guardian of our souls" (1 Peter 2:25), and not lose the blessed hope (Titus 1:2) that we will be reunited with David in a more peaceful place. A place, as Sam sang amidst Mordor's darkness of despair, "where stars forever dwell," immune to the stormy clouds obscuring our tiny portion inside the vast reality of God's eternal love.
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Mag~ we are all certainly without fault. That one stuck with me. I am moved by those powerful words. All you have been through, I think youre beautiful, and I believe in your strength to carry on with this. I had my estate planning done. Unless you have a ton of money to distribute, I was told I didn't need a will. I have my power of attorney an advanced directive are all done. So no one will deal with anything other than a cremation,no service. I just really don't want alot of sadness and crying. Just play four chosen songs, each dedicated to one of my closest inner members. DH, DS,DD,DSS (five should my mother & step father still be alive! Take the time to figure out your next step. One that will bring you power. One that will make something you've been putting off done! I noticed the more things I had hanging over my head, the less functional I became. We are always here for you and we hope you will allow us to be shoulder when you should need one. In deed you are now apart of the circle! Warm hugs and much love ~M~
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Gracie~Hi sweetheart, thank you so much for the good wishes. We have some scans in December as well. Claudia I believe is also in December, you're not alone by any means. It's so nice to see your beautiful self here. I miss you when we don't talk ! Maybe now I can breathe a little calmer for at least another six months. I am so thrilled, for you too Mae and our Chelle!!! Let see keep the movement going here ladies. Lynnwood has another blood work really soon. Let's vibe her tumor markers back down!! You're all so special. We are here to help each other through this shit stew. I will be here! Much love ~M~
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Magda, That was the most beautiful eulogy I have ever read! Your Dh sounds like a wonderful man! Please try to remember the good times! I know those phone calls are rough, but I agree with Micmel, don't leave them hanging over your head.
Mae, Micmel and Chelle, WOOHOO!!! Oh happy day!!!
Gracie, try not to stress about it. I know easier said than done. I am pretty sure my scan is going to show progression. The MRI I had done of my hips and pelvis showed possible 4mm new lesion in my right hip and possible cancer cells in my bone marrow in my right hip. So I'm just waiting for Pet to confirm. I have plan B in my mind, and I'm sure Mo had plans B & C ready. Just curious whether we agree or not. I decided I am going to enjoy Thanksgiving with my family, and have a great time planning there Christmas gifts! This Christmas, we are giving experiences for presents. Like tickets to the Aquarium, State Park passes because they like to camp. Things like that to make memories! I'm also thinking of renting a house on the beach next summer for the 6 of us. Either way, I am all about making memories!
Lynnwood, I am thinking of you and praying your next blood draw shows improvement.
Hugs and prayers all,
Claudia
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has anyone else thought what a shitty word lesion is? I mean really every damn word associated with this disease is so harsh to either say or hear! I could make a list, but we all don't really need to look at the shittiness even more.
I just saw a thanksgiving commercial, and I am already exhausted just thinking about it. I am going to be useless because of major fatigue, I'll do what I can. Like make the stuffing, because that's my thing. But I literally just woke up a half hour ago and it's noon. I could just continually sleep. Every day. Hour and hours I sleep. Throw in some holidays and I don't know how the hell its all going to get done. My neighbors house is already all decorated for Christmas, like ugh!! I don't even want to deal. It's all work, and I am already tired. At this point I don't even think we are going to even decorate for the first time ever!!I don't know how some of you ladies do it. Hats off to you wonderful women who make things happen!
Claudia~I love your idea about making memories, that really is such a good idea. I am down for that, my only thing is I would most likely be too tired to go. I hate moving. I used to be a runner. Now I can barely jog. I was built like a tank for a woman and my BMI was extremely low for my age (47). Now I have one boob, a map for a stomach, totally different hair, my left arm has lymphedema. I don't even know what happened. One day it was gone. Not all on the same day, but it sure seems Iike it. I asked my onc nurse about having him decrease my milligrams. She said he would never agree to that, because of how well I am doing. His theory is if it ain't broken don't fix it. I can see the logic, but I am just completely exhausted every day. I am in awe of you mucking stalls, riding horses, traveling while riding. I mean you're amazing and i am truly envious. Like I said, amazing wonderful women On this thread and site. Tune in next time, when we highlight the amazing Mae and our lovely Keetmom! Who btw I haven't seen and am concerned. Thinking of you sweet woman. !
Love to all you ladies. ~M~
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One thing I wanted to mention is how awesome DH's company has been. It's an insurance company (also with financial groups) a few thousand people, and he managed (until recently) a web applications development team. He didn't like managing though, because seemed all meetings and reviews and paperwork and stress. He stepped down a month or so ago, a lateral move to software architect. He had been there 23 years.
His boss and the new manager of his team were at the hospital every day, and every team member visited. Cards, fruit baskets (no flowers in ICU). Even his CFO was there a couple of times. The whole IT department was unstaffed during his memorial service. The day after he passed, before there was even a death certificate, his boss, manager, and an HR rep came to the house with the check for his life insurance.
Today his boss and manager came by, handed me a few envelopes, sat at the kitchen table & chatted, offered real actual physical help for anything we needed, and picked up a few pieces of equipment that DH used when working from home. After they left, I lay down to take a nap, and opened the envelopes. 2 of them had cash donations from his colleagues, the third was a card signed by dozens of them, with expressions of sympathy, love, prayers, and assurance that I am still considered a member of their family. I was so blown away I just lay here weeping for their huge hearts. They will make sure my cousin and I never want for anything. (Don't know if I mentioned, my cousin is a very vigorous 80 and my caregiver.)
Unbelievable.
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