My Husband, My Life, My Love, My Family, My Cancer
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I feel incredibly grateful, my MO messaged me back and asked if I want to be on a temporary medical leave or permanent, she supports whatever I want. Went to a nearby outdoor chowder house on the coast and ate crab cakes and a whole lot of fries, drank peach lemonade, looked at the water and actually relaxed. For the first time in a long time. Felt like a message from my dear husband, "please take care of yourself sweetheart, until we're together again".
Still pissed that my career is ending, don't get me wrong, but those crab cakes were delicious, and I want more relaxation and even maybe a bit of joy in my life, while it's still possible.
Thank you again for all the love and support here. You all have helped me not lose my mind, truly. Thank you Mel for the living room
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GailMary - thanks for the tip. You pointed me in the right direction.
Cookie - I could make it back to the thread easily, but I wasn't finding my way back to my last post in the thread, which could be pages and pages back in this thread. There's so much love and support here, we fill up the pages fast!
Overall, I am not having difficulties with the new platform. And tips from people along the way help.
SF-Cakes - how sweet that you feel your husband's messages to you. I'm happy for you retiring. I wasn't sure I wanted to retire when I did, but I felt I needed to. I still offered offline support to my friend/coworker for awhile (I really felt I left her in the lurch). After all was said and done I adjusted to being retired very quickly and I'mso glad I retired when I did.
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Hi everyone. Thinking of each one of you sweet ladies and gents. This thread does move quickly and I'm sad that I can't respond to each and everyone of you. Just know that I care about you deeply and appreciate the love and support towards all at Mel's porch.
Oh love to hear about those of you from Philly and NJ area. I was born in Reading, PA . My family is still there. Huge Eagles and Phillies fan. Seaside Heights, NJ was our go to seashore.
I had a infusion of Zometa today and my first ct scan since starting treatment. (MO did not require contrast, which I appreciate due to increased risk of UTI's courtesy of neurogenic bladder issues). Every patient in the clinic was required to sign a form acknowledging that they will accept generic cancer drugs, due to the shortage. The RN said it has gone from bad to worse with supplies. This is completely unacceptable. Production lines need to open up as it is detremental to the health of cancer patients.
Mara, your ability to stretch your foods is remarkable. With the price of groceries it is difficult to get by. Two thoughts come to mind. DH has volunteered at food drive for years. It's run by a church group weekly. Also, I saw a post in my reading about pharma companies that offer patient assistance programs towards bills, food, etc. Perhaps you can connect with one of these programs?
sfcakes, you so deserve to put yourself first and enjoy your life. What a sweet moment that you felt your husbands presence and wishes. Do find your way forward with the ability to miss your career but enjoy the free time. You'll be surprised how busy you will be and time flies by quickly.
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Sfcakes
You are in a difficult transition, but it sounds as though your experience at the chowder house is showing you how good retirement can be. You have a lot of good days to live, enjoying as much as you can for as long as you can - don't let work get in the way. It seems like it was an important part of your life but it belongs in the rear view mirror as you travel on to more wonderful experiences. Glad the MO is supportive.
Irishlove
Seaside Heights is the place I most remember when I think of the shore. I was there every summer from birth to age 15 , and it will always be my favorite boardwalk 💗. Such wonderful memories.
Hope your scan results provide a simple solution to the pain.
Does anyone else on the East Coast notice an improvement in eye irritation this morning? Yesterday's rain seems to have washed a lot of pollutants from the air and my eyes feel normal for the first time in weeks
Hugs to everyone.
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sfcakes Cheers to the start of retirement🥂, happy for you! That crab cake dinner sounds delicious , I love a good crab cake too. I'm sure your husband is celebrating with you!
So glad we got the soaking rain for a couple of hours last night, the birds are rejoicing this morning. We luckily didn't have much eye irritation here , glad you feel a difference eleanora.
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my eye’s definitely felt better. We had no irritation here for a few days now. I’ll take a crab cake x’s 5. Love them. Sounds very calming. Sending hugs to you. I’ve always seen the water as a calming source for my mind. I love the beach, for us it’s was wildwood as a kid and ocean city. When my kids were little. Good times and even better memories….. life is fleeting. My dad said to me while he was passing, pay attention to yours. I’ll never forget it. So let’s try to live each day. Somehow.
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Love you all and welcoming new members to this thread, it really is a living room we sit in. Living in each others pockets with food we may need.
Not sure what I want to do today. We are in the middle of the month and I have done well at spending money from surveys on groceries. I have also avoided fast food delivery services. In that vein, thinking of going to a store that offers some nice food at a reasonable price and use it to fancy up some meals.
I am in the middle of laundry, surveys/games for cash and figuring out breakfast, thinking I will make an english muffin and a poached egg. If I do not want an english muffin, maybe a poached egg and a hashbrown with some salt and a little bit of fry sauce, 1 part ketchup, two parts mayo.
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Hello all. Thank you all for the well wishes for my scans. I am online now and catching up on your posts. I see Cookie's point about when she said that about worry and it is like holding an umbrella when it is sunny "in case it rains", but I guess I don't want to be caught off guard without the umbrella and then it pours. Know what I mean.
My scans were "stable". I do not have the specifics, because the scans don't flow to the patient portal yet for me to pick them apart and read every word. But my MO said that nothing has changed and I will continue the same treatment and do scans again in 4 months. Praise the Lord. I struggle with the side effects— GI issues, fatigue, etc— but it could definitely be worse.
My friend loss issue— Cookie, yes I am probably "better off" without my friend, and that relationship was "too much work". I agree with you on those quotes. And seeQ, yes to your quote of "never-ending continuousness". I can just hear my friend say "Candy, your cancer is quiet so there is no reason you should feel bad. You should do stuff. You are just milking it." He doesn't understand that I am still in cancer treatment and the side effects of it. Yes, the cancer is quiet, but I still don't feel well or like the old me (prior to cancer).
Welcome jobbibo.
Thanks to you all.
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@sf-cakes I wish I could have been with you celebrating with crab cakes but I have no doubt your sweet husband was there. I’m so happy to hear you were finally able to relax. ❤️
@micmel I love your father’s sentiment. Thank you for sharing.
Im on my way to the Miami area for my second opinion. I hope the trip is worthwhile. 🤞🏻 I’ve decided I want to wean off prednisone. It was a miracle drug for a few weeks and now it’s just bringing more and more problems and working less effectively. And there is no way I’m increasing my dose.0 -
So I decided to treat myself to ordering a pizza which I can add extras too, basic pepperoni. I also added garlic bread, that could go with egg meals beans or whatever I want. For a dessert, got some double chocolate ice cream cookies. The cost is maybe a couple dollars higher than fast food delivery but it will be better. I can also do a lot with those ingredients as well. I am also going back to bathtub blanket washing, fill tub and add all my blankets. Reason I mention that is because I can take the leftover change I was using for the laundry and buy extra groceries if I think of any needed.
In short, I would rather get food at my place than spend on delivery. Not hard to pickup either, bus goes straight up there.
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@sf-cakes crab cakes, peach lemonade and a water view sounds like a perfect day to me, glad you got to enjoy it.
DH and a local guy are starting leveling work on the property today for placement of a shipping container that will allow us to move everything from storage in Houston to here. Bedroom walls will go up soon after that. DH says we will have a kitchen by thanksgiving but I know better, I’m in between laughing and throwing a fit, depends on the day.
had treatment yesterday, so the only thing on my immediate agenda is watering plants and taking it easy.Hi to all 🙂
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Enjoy your day Mae with the plants.
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RK2020 - I don't want to sound the "scary" alarm here in any way, but I do want to say that I think it is really good that you want to taper down your steroids. I have an old friend who has stage 4 lung cancer and she was on Keytruda for a couple of years and then developed some sort of awful side effects from it. To combat the side effects they gave her high dose steroids. She didn't like them and over time started feeling worse on them and said something to the nurse practitioner, but the NP just said that that was the dose the doctor wanted her on, so she would only leave it that way. Fast forward a couple more months and my friend wound up in the hospital with "steroid psychosis"! She had to be taken to the hospital by the police, because she had become combative with her husband, a neighbor and the 911 medics who were all trying to tell her she had to go to the hospital. She was there for a good couple of weeks and gradually improved, but in the meantime did and said things she's terribly embarrassed and ashamed from. Apparently most people recover (about 90%), but not everyone who gets this. She is now left with permanent damage from both the Keytruda and the steroids - some sort of rare autoimmune problem. She can't even put on her own shoes and socks now and more. She hadn't been able to see the doctor in months, just the NP. When she was in the hospital the doctor showed up and exclaimed, "I never wanted you on that high a dose for so long!" She was enraged and thought, "Then where the hell were you!" Again, I don't want to scare anyone here at all, but long term high dose steroids can be super problematic. My friend's story isn't the only one I've ever heard. Also, this happened to my friend almost a year ago now, and many believe this was all complicated by Covid and staff shortages, etc.
RK - I hope your second opinion proves to be a big help and that you manage to pull all this off for the better. Take care and best of luck to you!
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Three tree, I can believe the steroid issues from high dose steroids, I was on them from July to almost end of Sept in 2016. My brain was quite swollen from a brain tumor that was 10 cm. I did not do well while on them mentally. Fast forward to end of my whole brain radiation, starting weaning off the steroids but admit that I weaned off a bit faster to get the drug out of my system. I am sorry about your friends experience.
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@sf-cakes I’m glad you spent and enjoyable relaxing day eating crab cakes, and peach lemonade overlooking the water! That sounds like a perfect way to take the other stresses of this disease out of your mind. It’s hard to lose the person we always were. I know you are grieving the loss of your career. Those feelings are so raw in the beginning, but each and every one of us have faced these life changing losses and understand your feelings. Just keep doing what you are doing and taking as many days to do what you enjoy, and you will experience gratitude for those things and the feeling of gratitude always elevates your vibrational levels and your mood. 💗
@threetree & @rk2020 Wow that steroid story is a good heads up on making decision with your Oncologist on your treatment meds. Our bodies know what we can handle. Also we need to always be in communication with our Oncologist and not be only seen by his NP. When I have my followups my Onc comes in with his NP. When he finishes and leaves the room, she follows up with his recommendations, and appointments…
Mara..i love tour daily update goals & breakfast plans🥰
Mel…sending hugs and thank you for starting the living room 💗
Have a blessed day to all here💙
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Thank you Mara. I'm sorry for all that you went through with steroids too! I think it's really important that people know the dangers of those things. Sometimes I think the medical industry hands those out like candy anymore. Back in the day, I remember they were very sparing in prescribing steroids because they can be so dangerous, but over the last decade or so, I've been offered them for bronchitis, and general aches and pains. I always turn them down. I had a bad experience with them, too back in the mid 90's (inhaled steroids for sinus and asthma). Never again if I can at all help it.
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Good morning, all. I just got back from my swallow study. Nothing too alarming – no aspiration, silent or otherwise. The barium pill did kind of stick in one area, but I can’t feel that. Thank you for the encouragement.
There is so much going on with everyone here. My heart hurts for all of us but I’m glad we have each other.
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Well I did get to the store for the pizza, garlic bread and the chocolate ice creams, will be good meals and am looking forward to them. On my way to the store, it started raining and of course I had no hood so some people that know my cousin and me apparently offered me a ride part of the way home, I accepted. I don;'t know about anyone else by I do find it quite awkward getting in and out of cars or vans, always have to think about where my foot goes. I was also happy to get the ice cream cookies into the freezer fairly easily.
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Candy~ you really hit home when you said. I still don’t feel well even though the cancer is quiet. (Congrats on stable) I totally understand that. It’s never ending of not feeling good. Or maybe we should say. We never feel good. Maybe one day here or there I don’t feel the long enveloping curtain of fatigue. It’s always there. It’s good to see you.
I lost my best friend to this cancer. I’ve become the friend who doesn’t do anything so she just stopped visiting me. When I was first diagnosed she was here a few times a month like almost every other week. Now I haven’t seen her in three years. We spoke by phone last month for a bit. But it’s nothing like it used to be. Never will again I can say. So I’m sorry for you. I’ve known this woman since I’ve been 13 years old. We lived next door to each other growing up. Close as close can be. It’s breaks my heart actually. Not that getting cancer didn’t.0 -
Has anyone seen the old James Mason movie called Bigger than Life? About a guy on steroid therapy for some medical condition. He gets completely strung out. I thought about that movie when I had to take steroids with chemo. A cautionary tale.
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Yeah, Mel, I get it.
Now that I got the "stable" news, and good-for-4-more-months news, I am thinking I should go and live life for the next 4 months. Then…. I think….what do I do to "live life"???? I am back to in-person church services (was doing Zoom only during the Pandemic), and I am back to an in-person volunteer-once-a-month meetings (versus Zoom like before). But I don't feel like doing too much. I tire easily and would pay later for going out and overexerting myself— would be totally exhausted. And I don't want to embarrass myself if my GI issues act up when out in public. So I cannot really think of too much to do to "live life". I cannot go back to work; I cannot resume my yardwork as before cancer; I cannot have the old stamina back. I am not the same person as before. I now have limitations I did not have back then. So I am struggling with what to do now so that I am not just wasting my days I have left. I guess I just have to learn to live within my limitations. And maybe do small things that come up periodically.
But it is a lonely and boring existence. Not like I was before cancer.
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Candy~ you’re not alone. In fact. I think we may be the same person. I know exactly how you feel. Exactly…. The person I was is gone.
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I'm catching up again. The last three days wiped me out. After trimming some of my hedges on Saturday I headed to work on Sunday only to discover my forearms and hands were so sore I had trouble holding a glass up without using two hands. It's my own fault, it would not be the end of the world to save hedge work for my longer stretches off. Work was nuts and I had over 11000 steps in both days. Yesterday I was barely able to walk from the unit to my car. I am so tired today that I am doing a few loads of laundry and a short grocery run but largely leaving everything else for the next few days. My best friend is coming down from Portland over the weekend so I will get to visit with her Saturday and Monday. I'm excited. She is one of those rare friends that has stuck with me through all of this.
I think it was Shanagirl and maybe Cookie54 that mentioned not pumping gas. LOL. I forgot that quirk was not unique to Oregon. I've been here 20 years now and it would take me a minute to figure it out again.
Welcome Jobbibo. This is a great thread and I have found both support in the hard times and laughs in the good times here. I hope that it benefits you too and that you feel us "in your pocket" as the saying goes on the thread.
SFCakes I really connected with your post. I'm struggling more and more at work and wondering how far I can push this and I'm angry about that. This was not the plan and I'm still figuring out how to pivot into a new one. The water and the crab cakes sound amazing, I hope you enjoyed them.
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Good afternoon ladies
Im at physical therapy -the east part right now.
sf cakes the crab cake peach lemonade just says relax and enjoy. Im so happy you were able to.
Candy do you still mask when you go to church? I go sporadically for religious services but find I’m the only masked one. I do t want to get sick.RK2020 good luck with your second opinion Miami trip.
Mel I’ve been to Maryland ocean beach with my kids many years ago. What a beautiful place.
Welcome Jobibbo.
Emac enjoy your beautiful long lasting friends visit this weekend. Such a wonderful thing to look forward to.
Sunshine I’m glad the swallow test is behind you now!
Three tree thanks for sharing the dangers of steroids bc I think some things get neglected by our medical providers.
Mara that was a long stretch that you were in with steroids but I think you were monitored well. Im happy it worked and now you’re here creating recipes!
Mae I can see you sipping peach 🍑 lemonade in your she shed.
AJ thanks for the cautionary tale and humor.
congrats to all the stable scanners!!!!Take care ladies
Tanya
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Tanya- Yes I mask in church. I am the only one that does. And I sit by myself. I don't feel comfortable sitting shoulder to shoulder with others in a church pew. And I did not stay for a noon meal we had— both because I would have to unmask and sit around a table with other people, and also due to my GI issues. So I went home instead of staying. Before cancer, I would have stayed and enjoyed eating and socializing, and even stayed after to help clean up.
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Rk Sending positive thoughts for your second opinion I hope they have something good up their sleeve.
Mae Kitchen by Thanksgiving would definitely be a nice holiday treat.
Mae Pizza and ice cream cookies sound yummy enjoy
Candy Yea I get it not wanting to be caught in a down pour. I find it hard to find the right balance sometimes for sure. Congrats on stable! I think living our lives doesn't have to be anything fancy just doing whatever makes us happy for that day. Sometimes I have thoughts like should I be planning trips etc but honestly if I die tomorrow I wouldn't have any regrets.
Yikes steroids can be scary…
Mel I'm sorry you lost a childhood friend to this crappy disease .I just don't understand the abandonment of people that we thought were good friends…it's very sad.
emac Glad to hear your friend stuck by you and is coming for a visit, enjoy! Hope work isn't crazy for you tomorrow and you regain some stamina.
Sunshine Glad the swallowing study was ok, glad it's over for you!
Was a beautiful day I got lots of yardwork done. Thank God I had lots of energy today, treatment tomorrow.
Sleep well ladies….
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Good evening everyone. Hope the evening finds you enjoying peace and tranquility.
candy, Great news on scans! You sure summed up how most of us feel about before b.c. and after b.c. I no longer feel guilty about not cooking or cleaning. Today was to be first adventure out of the house, short of doctor visits since diagnosis. I couldn't pull it off and am disappointed for DGD. We had tickets for a baseball game and it's still too hot tonight to sit in the bleachers. sigh. Hope to make it up by first swim in long time.
rk2020, best wishes for a fruitful trip to Miami for that 2nd opinion. What facility are you going to?
threetree, what a cautionary story about steroids. Now for my steroid story. I felt a creeping paralysis that started at the base of my spine. I went to the hospital where I was diagnosed with incomplete transverse myelitis. It was so damn frightening. Shortly after I also rec'd an MS diagnosis. IV Solumedrol was my life saver. 5 day course, and side effects of the ying and yang mental disposition, weight gain, round face and a voracious appetite. However, the intense steroid treatment suppressed the swelling on my spinal chord and I was able to walk again. It didn't happen overnight though. Eventually we went with a chemo drug as I kept relapsing and accumulating more disability. Steroids can cause brittle bones and cataracts, too. Tapering with prednisone is a must.
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My goodness ladies, there are so many posts that my mind just can’t keep up so please don’t take offense if I don’t call you by name.
Mel - losing a lifelong friend had to be rough. Just one more thing cancer strips from us.
candy - I’m so far from the person I used to be that I don’t even recognize myself. Cancer sucks.
My second opinion went really well and m thrilled to have her on my team. She arrived with her NP and a scribe. She took her time regurgitating my history to make sure she got it correct. She drew pictures to describe how Enhertu works. She wrote notes for me to take home with me. She was knowledgeable, confident, easy to talk to and empathetic. As expected, her plan A was Enhertu. Her plan B is a Sacituzumab trial but I told her I wasn’t ready to do another trial and she completed agreed that we need to bring my tumor burden down before considering that. Hence plan B. We talked about Y90 or cryoablation if i wind up with a pesky liver lesion that resists treatment. We talked about my jaw. She is hoping the Enhertu makes it better but in the meantime she wants me to see my dentist and possibly an oral surgeon to rule out ONJ. I see my dentist later this month. She also gave me a strategy to wean off the 10 mg prednisone I’ve been taking for the last month. She said given that prednisone is allowing me to breathe without pain, she would like me to wait on weaning off until about 10 days or so after first Enhertu infusion. She said her patients on Enhertu can start seeing results very fast. In the past when I’ve taken steroids, they were either pre meds or a dose pak that only lasts a few days and weans you off. I never had an issue. The prednisone did allow me to enjoy 10 days with my son and his gf so for that I’m grateful. Oh and someone asked where I went…I went to Baptist Health which is in Plantation FL, north of Miami. I referred to it as Miami because that is easier for non-Floridians. Thursday is my first infusion and Friday is a liver biopsy.
Good night all. I hope we all sleep well.0 -
RK2020
You're second opinion MO sounds amazing.
Don't know what kind of research you did to find her, but WOW, great job. So glad you have her on your team. You deserve the best.
In your pocket for your infusion on Thursday and biopsy on Friday.
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rk2020,
Your second opinion MO sounds exceptional. Will your liver biopsy be sent for Travera testing? Hope Enhertu is effective for you and tolerable. Your MOs words about Enhertu are encouraging. Please keep us informed. Keeping you in my thoughts and prayers.
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