My Husband, My Life, My Love, My Family, My Cancer
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So mammograms 10 yrs b4 a 1st degree relative was dx - that would have put my daughters at 24. What about these young MBC patients? Again, their daughters will have to start screening at such an early age😱. I hope and pray that by the time these youngsters reach that age there will be a better way to test for breast cancer. My mammogram was clear but a lump was found that was malignant. Age 34. Age 44 the radiologist cleared my mammogram. My surgeon went over them with lots of magnification and felt there was something there. Sure enough. Probably added years to my life and just needed a mastectomy. No chemo. Too, too many young women having this awful disease. Hate cancer of any kind. Why so much?
Elderberry - that smile on our youngest golden is know as the ubiquitous golden smile. As a breed, goldens are known for smiling😊😊.
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Does anyone know what percent PD-L1 positive you need to be to get immunotherapy?
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Feeling kind of depressed today. Sorry.
I have not attended church since Covid started. I watch the service online-- they live stream it. I used to be so involved in church--- taught Sunday School, was in the Ladies Group, etc, etc. Today our Pastor announced he is retiring. He will be 85 his next birthday and his wife is having health issues. Well, our church will now be looking for our next Pastor. Assigning a committee, conducting interviews, etc. As a "shut-in" now, I will not be involved. I feel left out. Then I got to thinking about my funeral. My own Pastor (future Pastor) will not really know me since I cannot attend in-person and be active in the church. Will he just have to stumble thru my funeral service since he doesn't know me. I know I am not the only one with these issues. We have always had "shut-ins" in the church--- the elderly and sick. Now I am one of them. Just depressing.
And then I called my sister today. She is always busy with her family, job, her church, etc. But I feel she has written me off. We lost our other sister to MBC in August. I just feel my remaining sister just feels it is a matter of time that I will be gone too, so she is distancing herself from me. My sister that died went relatively fast. I feel like I am dying a slow death. Just slowly vanishing from existence.
Sorry for the depressing post. But just wanted to tell someone how I feel. I needed to get it out.
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Great article Mae. Thank you for your bravery. Although I am not as young as so many of you (I am 68) some days I still feel young. Then some days I feel very old! I don't post often here but read and pray for your needs.
My Stage IV de novo dx was from a suspicious shadow under my arm after a mammo. I was extremely consistent with mammograms since I am adopted and did not know my history. The previous ones were all fine and techs never found any tumor in either breast...and still never have. But wham, stage IV. It has been over five years now. In the last two years I have discovered my family on my paternal side. My brother has had breast cancer (he is now in remission), my dad died of cancer, and my uncle (Whom I am going to meet for the first time this Wednesday) has cancer. Had I known any of this, would I have been able to have a more thorough exam? Would it have discovered my cancer sooner? Would it have made any difference with an earlier diagnosis? I have no idea. I agree that we need earlier screening and better detection. I fear for my own daughter and she now has to live in fear every annual exam until she gets her results. I push her for mammos and to watch for other indicators. It is sad she has to do this. I join you all in your emotions and fears praying for an answer...
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Candy, I'm so sorry for what you're going through. You have been going through so much, and I'm glad you feel you can come here and talk about your grief and sadness. I am sending hugs and wishing for something good to happen for you. It's been such a heavy time.
IntoLight, I was also de novo. It's never been found in my breasts. I was the only one in my family until my one brother was diagnosed with cancer and died within three months. Then another brother was diagnosed with breast cancer. There is no generic link. It's all such a mystery. My brother has ductal and I have lobular. I am scared for my daughter as well. Lobular is just so hard to see, so telling her to get mammograms may not help at all. She had an ultrasound last year, and just like me, she has dense breasts. She's 31, so I don't think they will do routine mammograms on her yet.
I'm glad you were able to find some of your family but sorry they are also suffering with this horrid disease. I hope your meeting with your uncle goes great.
If you don't mind, can you tell me if your daughter gets mammograms and other testing or is she too young?
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Candy, I'm sorry you're feeling so down. You've been given some big challenges and I'm not sure many people could withstand as much as you have. I wish you could get back to your church participation but I understand your Covid reasons. I know you've tried some anti-nausea meds. Can your palliative doc help with something you may not know about? I think if you could be helped with some of your physical discomfort then maybe your outlook may improve? Hugs to you. I'm sorry I don't have any real help for you. 🌺
Elderberry, I love your dogs all together. Reminds me of young cousins who get together and have fun.
Kittykat, I'm sorry I'm so slow to wish you well and jump into your pocket. Bringing popcorn. I hope you're getting some answers.
Hello Everyone. 👋
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Candy, I am sorry as well for your sadness right now over being more involved with the church, your pastor retiring and your sister who is so busy. I can empathize with that feeling sometimes.
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Goldens~nothing like that breed. I'm a huge fan myself.
Dutch~I'm sorry I don't know the answer. I hope you find it. Call your oncs office with questions. That's what they are there for. (Even though they sometimes forget
Candy~I go up and down with ny down depression days. Just knowing I have cancer bothers me everywhere I go. I believe it could drive me crazy if I stayed in my hole. I spiral fo sadness and sometimes takes a few days to come out of it to a after cancer normal. I'm not dying today. It's a scary thought to know that what we have is deadly. Some days I still can't believe it. So don't be sorry for putting out how you're feeling. I do it all the time. Geeze , by now you guys probably think I'm a crack pot . It's an emotional and physical thing to go through and it sucks rear end. Just know you're not alone. No you're. Not.
intolight~always a nice thing to see your name here. Although not often I always enjoy your words and insight. I am also denovo. I just don't know how it happened either. I hope you're doing well and it's nice to see you sending you. A welcome back 💐. Stay safe !
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Mel, I sent my onc a message in my portal. I always worry that I am bothering people so sending messages causes me to stress. My onc does not do anything that makes me feel that way. Now I am awake when I should be asleep. Ugh...
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Candy, I'm so sorry you're feeling this way, I know its especially hard when you've been so involved in your church and how covid has changed everything, all I can suggest is to maybe start engaging with your new pastor over the phone and letting him get to know you and the contribution you've made to the church over the yrs and ask if you can help from home in some small way.
I get with the family being too busy, unless I call my son and daughter I rarely hear from them and my grandkids, if it wasn't for my daughter, Beck and Finn I'd have little to no family contact, and I haven't heard from my brother and sister for yrs, even though I've reached out a few times. Just know that you're not alone, everyone here cares.
Unfortunately I'm still in the hospital, they started me on steroids today, hopefully they give some positive results.
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Candy - I’m so sorry you’re feeling those emotions. I was very involved in our parish in mid-Ohio b4 we moved to WI 2 yrs ago. I was a cantor and my favorite volunteer work was in our prison ministry program. Our ministry team went into a low-level state facility in our community. I spent 8 yrs as the choir director for the Catholic community. I also went in one day a week for rosary prayer/communion service and attended weekly Mass as often as possible. I can’t tell you how much I miss that contact. The men we all mentored became our brothers. It was so hard to leave. But what helps is listening to contemporary Christian music. I hear songs that we sang together and that keeps my soul connected to the men. And when I hear new songs, I will print copies of the music/lyrics and send them. The station I listen to is Life 102.5 on Google Home. Works in Alexa too. Or you could just search for a different station. The music helps me focus on something other than this damn cancer. There are so many beautiful songs out there that are perfect for me. I get a sense that you have a strong faith and I think music can fill a void you miss right now. Sending you 🙏🏻 for peace
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In the pockets of everyone needing me, whether for tests or having a really bad day which sucks rocks for sure, thinking of you today Candy.
I am feeling better with the really sore throat. The fatigue was subsiding by Saturday and between frequent salt and baking soda gargles, ibuprofen and buckley's syrup, menthol and acetominophen to soothe it, it is much less sore. I still feel it was a cold since I was not feverish but I did stay out of stores as much as possible.
Cloudy and rainy here. Waiting for Amazon to deliver a big box of cat litter, oh the excitement, for them, not me. Other than that, going to walk on the spot in the house between times, doing laundry, small loads so might take the day. Air drying on a rack with two powerful fans blowing them for an hour, then into the heating rack tent for about 30 to 60 mins and onto a fluff cycle in my no heat tumble dryer. Got to say everything is so soft now.
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Thank you to all you wonderful ladies.
As Rosie said, the physical stuff is making me feel more depressed-- the fatigue, nausea, chronic pain from the ortho issues. I do wish I could feel better physically.
Mel- I know what you mean about thinking I am a crackpot. I hesitated on posting my post thinking you guys would think I am looking at things glass half empty and complaining all the time.
Kittykat- I wish you would get better soon and get back home. I am so sorry you are going thru this. I will see how the new pastor thing comes out. It is a good idea to call the new pastor and talk with him and offer to help from home. Shows I am willing to help and still be a part of things, and explain my situation to him. Why does family have to be this way. You would think family would stick with us, but NO.
Goldens- I do like listening to Contemporary Christian music on the radio. I have not listened to it in a while. Maybe start again.
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Sometimes families we have are not blood related but friends we meet along the way like here, sometimes other social media groups, virtual church too and nurses and oncs we are close to. I am closer with people here, my good friend I mostly talk on the phone to as well than most of my actual family. Blood ties are just biological to me. Just my opinion as someone also living alone without much contact with others.
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Dutch~when it comes to our health , I don't look at it like I'm bothering someone. We should have answers. I hope they respond quickly…..
Kitty~ I'm so sorry you're still in the hospital. Sending you hug and thoughts.
Candy~ hope you're feeling a little better at least, thinking if you too.
Mara~glad your throat is feeling better. Rest up!
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Mara-Glad you are feeling better
Candy-Hope today is a better day. As a pastor, I am a bit surprised that you have not been getting regular visits/phone calls, especially in light of knowing that you have lost your sister and are dealing with serious health issues. A big part of of the job for pastors in my denomination is visiting those who are sick or are no longer able to leave their homes. Even in the times of Covid, my colleagues have been doing visits to the homebound. Prior to the vaccines, they would bring a lawn chair and sit outside the screen door so people could still have that vital contact. I would hope that your new pastor will reach out to you and get to know you. Certainly, you reaching out to them would help them as they get oriented. Who knows-in six months, as natural immunity and vaccinated immunity continues to grow, you may be comfortable going back to church.
I have been celebrating my 5 year cancerversary which was on 9/21 for the past two weeks. Tomorrow I leave for a short trip to Budapest and Prague. I feel so lucky to still be alive after 5 years and able to travel. Having the booster, I am not too concerned. I'll be careful but strongly want to get out and live as much as I can while I am able.
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Chicagoan~have a blast on your trip. Be safe hope you make memories to cherish.
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Chicagoan- I am sorry to say I have not had any visits and only a couple of phone calls thru all this. I do have a couple of ladies from the church that check in with me, thank goodness. But not the Pastor or Pastor's wife. I have always wondered about that. We have an Associate Pastor, why I don't know as we are a small congregation, and he too has not called or visited. My regular Pastor is 84 years old, as I mentioned, but he does do some visits that I have heard of. The Associate Pastor is busy with a full time secular job. Maybe the next Pastor will do a better job at visiting the shut-ins.
I do hope I can go back to in-person church at some point. Our church is anti-maskers and some have been vaccinated, but most not. And I am still hearing of so and so now having Covid. It seems to be making the rounds in our church. Last case was a couple weeks ago, so still running thru the church. And now going into cold/flu season again.
Have fun on your trip. Wow. I am scared to get out at all. Good for you.
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Candy, I'm so sorry for all you're going through right now. I'm sorry your sister is distancing herself from you.
I think that when it comes to our funerals/memorial services, we should get to choose whomever we want to officiate or lead the service. Maybe your longtime pastor would do that for you. It's your "party", if you'll pardon the expression, so it should be planned according to your wishes.
Personally, I intend to have a church service and then have two receptions. One will be in the church hall (the typical cookies and punch, maybe???) which will be for church people. The second will be a rip-roaring block party with our neighbors. Since there will very likely (who am I kidding?) be alcohol there, it probably wouldn't be a good fit with my church family. We have the most awesome neighbors and if there is any excuse for a party, we'll do it.
Every Christmas, my husband and I have hosted a Christmas party/open house at our home. Last year was the first year in about 18 years that we didn't have our party and probably won't this year, unless we take it outside. We typically have around a hundred people crammed into our little house and we have the best time EVER. These people are FAMILY (the good type) and we love them dearly.
Sorry for the ramble. I wish you all a good week.
Love and hugs,
Carol
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Enjoy your trip Chicagoan.
Sunshine, sounds like a lot of fun.
I don't really intend to celebrate too much in the way of holidays. Going to Thanksgiving dinner this Sunday and then like Christmas day for dinner as well. Really not in the holiday mood anymore. After my Mom died and it has been mostly just me, see no need to celebrate. Yes I am happy to be around but other than virtually, so rarely see anyone and just don't care at this point. Been years since I decorated the house. When she was alive, we did get together regularly but now that she is gone, nothing much goes on.
On the plus side, I am feeling better, sore throat starting to go away. Gargling with salt and baking soda has helped a lot as well as advil and Buckley's. This will be a busier month for me, MRI this month to check on the enhancement noticed on my brain three months ago. Witness prep and hopefully testimony at the murder trial, just want to get it over with and help get justice for the victim then more appointments. That will keep me out of Pinktober crap as well.
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mara, I'm glad your throat is starting to feel better. Sore throats can be miserable. Have fun with your laundry (LOL). I'm going to try the vinegar instead of fabric softener on my next batch of towels. I'll let you know what I think.
Carol
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Sunshine- I do intend to ask my previous pastor to do my funeral-- if he can. I do not plan on going anytime soon, and he is going to be 85 years old in January. So maybe he will go before me.
Your Christmas party/open house sounded fun. Shame life is so different now that we cannot do those things anymore. Sad.
Mara- I am not the Holiday type either. Been that way for a few years. My mom was the family glue, so to speak. When she got frail things just went by the wayside. Now the Holidays are just lonely and depressing. I LOVE fall and winter, but dread Thanksgiving and Christmas. Wish I could just go from Halloween (my favorite Holiday) to January and skip November and December altogether.
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I just read that Casey DeSantis, wife of Florida Gov. has been diagnosed with breast cancer. I wish her every success with her treatment, but I truly hate the comment from her husband that "she will never, never give up." I understand the intent, but sometimes cancer kills us. That will NOT be her fault if that happens.
Going to cross post in the Steam Room for Anger.
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Chicagoan, have so much fun on your trip! I want to hear all about it (Budapest is on my bucketlist) and see pics, if you feel like sharing. I’m particularly interested in if you meet many ilona’s, which is my name, not so common in the US.
Just got home from my Herceptin infusion, so resting today and going out to dinner for DH’s birthday.
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Candy, I feel exactly the same as you do, want to skip from about October to January next year as well. I am feeling a little emotionally better now. I realize that today is my younger brother's birthday and I think that started the ball rolling for feeling down and a reminder of all my own recent losses. I think that tomorrow, more exercise will be in order to improve my own mood, don't want to feel this way for long.
I agree, hate it when it is seen as giving up when choosing to give up treatments when it makes you sicker or if a treatment does not work, it means the person gave up. So not true. His wife will do her best and they will either get her to NED or it will spread and she will die, not by her own choice. I will say a strong will does help get through different treatments but should not be put upon the patient to meet that standard.
Happy Birthday for Mae's DH, hope you have a nice dinner.
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Mae-I hope I meet some Ilonas in Budapest! It is such a beautiful name. My family has Bohemian heritage so I'm looking forward Hungarian goulash and Bohemian pork, dumplings and sauerkraut. One of my quirks is that I never take pictures on vacation. For some reason I never do it but I do write journals during my trips. Hope you have a nice birthday dinner with your DH.
Happy October everyone. I refuse to be distracted by "puketober." I just ignore it all and enjoy the beautiful fall weather.
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Chicagoan, Chicken Paprikash with nokedli is my favorite Hungarian dinner and it should be on every menu. My grandmother taught it to my mom and I made DH learn it from her before we moved to Texas, it’s delicious!
Mara, thanks for the DH bday wishes.
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Illimae-Thanks for the tip-I will have to try that!
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Happy Birthday to Maes DH. Thank you for taking care of our Mae! Have a great day.
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Micmel, I showed DH your comment and he smiled! Only his second smile today, the 1st was when he was watching me enjoy my dinner, lol. He’s been in a little funk lately, so thank you for that!
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