My Husband, My Life, My Love, My Family, My Cancer
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Micmel, re scans.... I have been treated at a pretty nice Cancer center which has a lot of complimentary classes, groups for emotional support, etc for for patients and ex-patients... Yoga, dance, you name it. In my evaluation I told them that they could get rid of art therapy, qui gong, and drumming and replace them only with *FAST LAB RESULTS* and every patient would have far less stress.
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Hahahaa Santabarbarian!! That's hilarious! 😂
Muddling and Micmel - you are too kind with the compliments!! And Mae thanks for the cheers!!
And isn't it funny they gave me that whole gown and robe and socks outfit? It was a new one for me too! Maybe the hospital has a new policy? 🤷🏽
Our weather has finally cleared here in the NE part of the USA. Sunny skies and no tornadoes in sight! Hoping everyone else out there is having a beautiful day!
Love,
Philly
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Santa~Well said And I agree fully. Totally agree. It's actually ridiculous. now I am going to have to wait until. Monday. What a shit deal that is seriously. They said they would call me back. Like I said. I didn't ask when... My bad. I will Never make that mistake again. Ugh!! I know they are busy.
Philly~(you changed your name back)~ it is lovely today in the NE burbs also. Enough tornadoes. I loved the picture of The PFSF building in the distance, looks very cool! Thanks for the smile! Lovely lady. I also collapsed after my scan yesterday. I think it was just me feeling really weak emotionally with the build up of the wait. I'm so glad you got yours fast. Wouldn't want you waiting like me, it's gotta be the back up. I would hope if it was bad, they wouldn't make me wait. Grrrrr! Idiots again (but I respect my ONC) very good doctor. Just doesn't have an assistant anymore. Never came back after maternity leave. My poor lip, been biting it with stress. Very low tumor markers. But just need confirmation for another 6 months. Sigh. Even that goes quickly. Much love ~M
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I have my first scans in August and my doctor's appointment for the results is a week later! I hate that idea. I wonder if my doctor will call me ahead of time. Hmmmm...
It's been a gorgeous day in western NY too. I had work all afternoon in my piano studio but my back's a little angry with me for trying to do a workout the other day. Too soon I guess. I took a little walk in the neighborhood with my cane today and it was just glorious outdoors. I have a tremendous and ancient rhododendron in my side yard that gets a lot of attention from passers by. I can see it from my chair here through a tall window at the end of my living room. I can't wait for the peonies though - my absolute favorite.
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Moomala~I have a massive rhododendron out front of our home that has been growing for twentyyears. It's lovely. It blooms like crazy this time of year and especially with all of the rain that we've had. It's vibrant this time of year. I adore flowers. any kind really ! When I was first diagnosed, I was keeping up my running, it was hard. It beat my ass. I need an elliptical, I would thrive with one of those. I really am on a Search for one, they are quite expensive. I'm realizing. I think a walk sounds perfect. I wish we all could walk together. A nice flock of MBC sisters. Yeah coffee after. If Mae is with us, we will need margaritas !!! 😜😃
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Looks like many of us are stuck in the same cycle of waiting. My PET scan was two weeks ago, and I got tired of waiting to hear from my onc. So, I called, and the nurse said they did not have any results yet. I called the facility where I had the scan, and they sent the results to the wrong place. Turns out, my onc is new to Moffitt, and they sent the scans to her in Gainesville, FL! The facility finally faxed the results over, and by then I was told my onc was out of the office for the rest of the week!! So I’m with you, Mel. Waiting. But I’m not going to let it keep me from enjoying my weekend. Not for a second. I’m going to enjoy the sunshine, and hope for the best.
Hope you all have a good weekend
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booboo that’s so crazy about your scan results!!! I would have to do some meditation practices to calm myself down if that happened to me. What can ya do?? I guess just be okay with waiting!
I don’t know if others do this or not, but I very clearly tell my MO team to please have my MO call me as soon as he hears any news about the scan results.
He has been awesome about calling me right away, thankfully. I am the type of person that doesn’t want to wait for the big “reveal” at the next appointment. I would rather know what I’m dealing with now and then we can work through the details after I’ve had some time to process.
I know some folks don’t mind waiting. I think you all must have a higher Emotional Intelligence than I do 😂
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The waiting for scan results can be ridiculous! I'm going to ask my MO to call me this time. I do mind waiting.Grrrr
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I believe the waiting is the hardest part. I agree! I would rather process then have the big reveal. It blows my mind actually. If it was them, they wouldn’t be smiling and having tea and biscuits. But I am going to be calm, because I am sick of being upset all the time anymore. It’s just exhausting. By ever since Runor had big enough balls to tel her friend exactly what she saw was happening. I have been remarkably better. Thank you all again for helping me. It’s a wonderful thing. Especially when no one else seemed to be able to. DH did a good job of course. He is my rock and my life ! Hugs to all. Sorry that you’re waiting. I’m waiting too. So annoying. I know.
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My Deeohgee is keeping a watchful eye.... He follows me everywhere... dogs are such special creatures! No judgement. I hope all the families find peace somehow with this tragedy... days like this, remind us to be thankful that even though we have cancer, we are living. Let everyone you know or care how you feel about them. Life is not guaranteed as we know and cancer may not be the way we end up going. This world is so messed up these days. You ladies are strong wonderful people. I am honored to share this thread with whom I call friends and sisters. (Chelle). Love to all 💜. ~M~ Lynne(50's)~I miss you around. We miss your words. Your kind support and friendship! Since I am sharing how I feel. I know big shock! Just wanted to tell you how I feel!!!!
It was a beautiful day outside today. I didn't have energy though. Some weeks off of ibrance I do well. This month my mouth has been so sore. Like only soft foods! But oh well, I want to be on this ibrance forever if I may! Good night lovely ladies ! ~M~
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Folks, I don't know if this will help anyone else, but here in Maryland, I have my scans done by Johns Hopkins imaging centers in the burbs. I have taken to going to the imaging center the day after scans and asking for a paper (and if needed or wanted, a digital) report on my scan (they are even open on the weekends, so if I can't make it because of work, I show up on the weekend). They give the reports to me, no questions asked. Sometimes my scans such as nuclear bone scans are done at the local Hopkins-affiliated hospital and if I show up at the nuclear medicine department, fill out a form, and wait a couple of minutes, same thing. I have just started re-scanning during the last year because my TMs starts shifting upwards. I realized that my oncologist (who I've seen since 2003) was VERY slow on the reports, and it causes me incredible anxiety. It is just easier for me to do this extra step and get the information myself. I know that it annoys the heck out of her, but her office is VERY slow to report (as is she). This is my way around it. I'm a big girl, and I want my scan information sooner rather than later.
Having said that, I realize that some folks only want reports directly from their oncologists, and that's okay. If so, ignore this suggestion. But for those inquiring minds who want to know, you can try this method at your imaging sites. I believe (although I haven't backed this up with research) that under federal law, they are required to give you the reports.
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Bev~Hi there! Nice to see you here. I think they should all be like that. After all, it is our bodies. It makes me really a tad angry....scared and really just plain disregarded. Like that number assigned to our diagnosis. Usually it's a lot better. I am realizing the combination of the Memorial Day weekend. (Everyone taking off for the long holiday. Friday and Monday.). Then my oncs office lost his assistant rn. Which is making it so he has to read every scan. Meanwhile his patients flop around like fish out of water, fearful and waiting. While the weekend goes on and on... I wonder if he stops to think about how many patients are actually waiting on him?
Thank you for sharing. I'll be filling out the suggestion box!
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Yes, I agree -- it's our information and if we want it, we should be able to get it. Sometimes I just want to shake doctors when they don't realize how much more stress is added by the fact that we have to wait so long to get our info. That doesn't help anyone but for the MOs who take their time getting info out.
I've got an even worse story for you -- on the Hopkins system patient portal, they have an automatic release policy one week out. So your reports show up a week later, and I don't think the docs can block it. On my recent liver biopsy, I had heard nothing from my MO and I had been told that it sometimes takes 10-14 days for a path report, so I hadn't yet stalked the hospital path office for a report. Poof -- exactly one week later, the path report shows up on my patient portal in all of its glory. I look at the report for the results date -- ONE DAY after the biopsy. My doc had had my results for a WEEK and had not even had the courtesy to call me. This is why I go and get my reports myself -- because then I contact my onc and ask -- what gives? (Needless to say, after this latest thing, though, I'm finally switching MOs.)
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yes I am not a fan of waiting, hence I very clearly and directly ask my MO to call me immediately with my results. I am grateful that he is able to honor this request. It sounds like many MOs do not do the same? Or maybe folks haven’t asked
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Usually I go around my Onc and my nurse gets the results. But if he doesn't view them, or if they are backed up and the radiologist hasn't even touched it, no one outside can access. I haven't patient portal which I am stalking night and day. Blood results, bam. Two hours tops. Scans. Which are worse to us of course, how on earth can think 14 days is ok?? We've already been tortured the prior 14 days with PTSD!! Ugh!
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lol about finding the nurse!!
And Oy vey about 14 days to find out??!!!
It is definitely annoying and they would not, I promise you, would not stand for it, if it were them (they?)!
I had an ultrasound of my thumb - because ever since I’ve been on the meds, my right thumb has developed trigger finger and went through some painful times. I am also a bodyworker and have been doing this trade for almost 13 years now, so this can also play a role in my thumb giving out on me.
Anywho, during the ultrasound, the NP who did the initial US, told me that once a year she has her team do a US to her liver, just to make sure all is well. Her hubby (also works in same office) broke a rib while gardening and the team immediately used the equipment to make sure he wasn’t having some type of heart or gall bladder attack or lung issue.
Basically - it helps to be in the medical field if you wanna get checked out ASAP when any issue comes up.
Those of us on the “outside” are mere cattle in the giant scheme of the medical system. We must wait our turn 😂
Dang we all went into the wrong fields lo
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meanwhile I woke up to this very adorable and touching email from my dad:
“Good morning!
Are you aware of this info? Does this apply to your type of cancer?
Drug extends life of younger women with advanced breast cancer, study says
Love & hugs,
Me”
It was kinda rough to have to explain that I am on the same drug basically, different name, already. Ugh this disease!!! I sent him an article in response and explained the whole thing. I feel sad that he got all excited about the potential for a new drug for his “baby” that I’m already 2.2 years in on. Hopefully I’m in that 20% that survives longer than 5 years!!
This is the email I sent him in my response:
Hi Dad!
Thanks for staying on top of the news!! This is wonderful to hear!!
Kisqali - the drug in your article, is a similar drug to Ibrance. It is made by a different pharmaceutical company and they are hoping to be part of the Ibrance excitement/competition.
I am on Ibrance!
Ibrance and Kisqali are both called CD4/6 Kinase Inhibitors and/or chemotargeted therapy.
Here's an interesting article about the rivalry: https://www.reuters.com/article/us-novartis-kisqali-idUSKCN1T233Q
Love and huge hugs!
PS I am very optimistic that I am in the 20% of women who live longer than 5 years!!! So far I'm at 2.2 years and going strong! ❤️
😭😭😭😭😭😭
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Philly, I read about that drug yesterday too, there were several articles in it recently.
As for scan results, I’ve been fortunate that my MO schedules my post scan appointment either the day of or next working day. She knows I’m eager to have the info and spares me any extra stress.
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My experience with scans is similar to yours, illimae. Scans in the a.m. and onc appt in the pm. The onc can pull up the scan itself and will always tell me and sometimes show me what they look like. She always prefaces it by saying its not official because she isnt a radiologist, but she knows I want to know results asap and am happy with her preliminary findings.
The other thing I do is request a printed copy of the scan reports from nuclear medicine. I sign a form, and receive the printed scan reports in the mail usually within 3 to 5 days.
I wouldn't worry about any hospital employee attitudes when report requests are made. If you do it often enough, they get used to it. It is our health and we are our best advocates.
They have the online patient portal which posts testresults but that always takes longer than receiving the printed copy.
To those who feel you wait too long, please speak up and let your onc know you'd like results sooner. I believe many will honor that request but maybe are not aware. Of course, I always suck up to my onc and thank her and tell her I appreciate all she does for me, ect ect, ect, and I am not generally a person who sucks up.
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Hi, I hope everyone is doing well. It's been difficult to keep up, but I'm trying. Stuck around the 31st and so much time has passed I wanted to update for myself since so much has happened.
Brain MRI showed 6 new lesions and spine involvement in c3, c4, and t10? We did a last minute week in Oahu, Hawaii. It was beautiful and we had some lovely memories. We also had some much needed conversations. I'm proud of how my husband stepped up to make sure I was taken care of at the airport and everywhere. This was our first dtrip navigating a airport in a wheelchair. It was different each time at each airport. Hawaii was hard since it's smallish on Oahu they have less staff, less chairs, easier to go through TSA. LAX sucked to go theough TSA and not because it's big but bc employee's dont seem to have a system in place. We almost lost our suitcase and then also laptop. The best time was the last when they had a wheelchair waiting at odur exit gate with my name on it so no random person can take it. Hawaii airport was bad on all my bandaging. It was hot and had no A/C so you sweat. It really messed upall the work I did in bandaging me. Pain has been ok as long as I take the max dose at the soonest time. Plus already started this new dinfusion medicine. It's weekly for 3 weeks.....yuck! BUT when you are out of options this is a door of hope. Mom will come to help and my sister too. Hawaii was hard just because it's such a small airport with part of it, the baggage.
Take care all.
I'm still reading to get up to date.
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Parry, So glad to hear from you. Sorry you had the difficulties in the airports. It’s certainly a different challenge for those with limited mobility, so I give you (and others) a lot of credit for putting up with it. It sounds like your trip was nice once you got to Hawaii. Funny how we sometimes connect with our spouses in a different way when we’re away from home. I think of you a lot and hope your new medicine is a powerful one! Do you need anyone in your pocket? I’m available.
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Parry, I’m very happy to see you back and I imagine Oahu is beautiful, the airport troubles suck though, sorry.
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Parry dear I’m happy you got to Hawaii it’s not only beautiful but peaceful and serene. The airport not so much. I had challenges with them breaking my moms walker but they gave us a loaner and had it repaired so it all worked out.
Nice that you had important conversations with your husband. It’s tranquil there. Lots of healing breezes, water and mountains.
Take care everyone
Tanya
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Thinking of you, Parry. Oahu sounds wonderful. Glad you had a chance to go. I have been to a Hawaii airport and it was basically outdoors. Must have been rough on that front. I am sorry to hear about the new brain lesions and spine involvement. It is super hard to keep up with this thread. I can't keep up either! I end up having to skip ahead sometimes. The volume is just too high.
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Philly~the COG of the health system. I like Divine, I'm not above schmoozing the staff to make sure I'm the first that they call. Like I said I called days ago. I should have asked what century they meant for a call back. I'm like ok no news good news ? Or ugh is he holding the bad news for my appointment Friday. Oh lord. This waiting would sink a ship! Walk a mile in our shoes people!
Mae~would you believe that I one place I have actually been!!! Hawaii ! Whoop whoop. Gorgeous place. I was on the other island and saw diamond head. Cannot spell Waikiki.. was the island. I loved every second of it. I was almost 14!!
Parry~Parry~ I am so glad to see you my sweet friend. I think of you everyday and I am glad you have gotten to see something so absolutely amazing. I am hoping against hope that your sight is going to get better and they are going to kick some cancer butt.. with a treatment that they haven't tried. They need to get busy, you have a lot of living to do !! I missed you very much!
Rosie~Hello darling. You're so sweet to pocket jump. We all need a little help from our friends. 💐
Tanya~How are you feeling?? I don't remember the Hawaii airport too much. All I remember is getting a kiss and a Lai. (Sounds funny I know)! It was a peaceful place of beauty and you're correct when you say serenity is there!!
JFL~as long as we see your beautiful smile and hear that you're doing good is all we need. It's funny because, I don't see this thread as moving too fast. I always have seen the ibrance thread as the power moving thread. I made this because I want a family, who shares ideas and opinions. (Good advice Runor....Mae.... Divine...Tanya.... and oh so many more). I worry about some I haven't seen. Donna Bella. Marianneelizabeth... Blueshine.
You ladies are wonderful. Have a beautiful day outside it's cool and gorgeous already here !
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Btw, if you've talked to someone on the medical staff requesting some kind of information, whether it is about scans or whatever, and they say they don't yet have the information but when they get it, they will return your call, and a day goes by and you haven't heard from them, it is okay to follow up with another call. I will not live with the anxiety waiting for a call that perhaps they forgot about. I will call and very nicely explain again who I am, first and last name, and mention that I had called about such and such a day ago but hadn't heard back yet and was wondering if there was an update yet. Honestly, the medical personnel have such work filled days that I don't think they mind a quick reminder like that. They can check on what you're asking and let you know. Keep in mind, they are used to patients calling in for info. You aren't the only one. It's okay for us to speak up for ourselves.
I also say things like,” Thank you so much for checking. I really appreciate it. I tend to get very anxious when waiting for results so that’s why I called. I’m sure you understand, so thanks for being so helpful.”
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Good afternoon Ladies~Finally.... the results are in and I am so thrilled to report that I am stable. Nothing new. Some shrinkage in the bone. Numbers are outstanding!! I am on top of the world today. I feel amazing. I was so worried this time. I had been so much more active with my dad than ever. That's what it was. I do honestly think I ve torn my rotator cuff.. that is what the pain is coming from. That's why I was worried. I Am extremely thankful and I appreciate the support and kind words during my whining and waiting. I can breathe for another six months. Sigh! Of relief. Onwards!!!
I'm hopping into pockets for support!! For sure!!! Much love to all!
Divine~ I was going to call again today. I figured the holiday was setting them back. My son had his toe xrayed Friday. Asimple X-ray! They told him the same thing. A week minimum from behind schedule. Talk to the hand I say! Fix it. Somehow. Get those results to the patients! Ugh! Hugs to all.
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Parry, so,good,to hear from you. Glad you enjoyed a lovely holiday. Sending love, think of the beautiful bride and groom often xx
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Micmel, that is wonderful news! Now go celebrate that terrific report with your sweet DH.
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Yay micmel!
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