My Husband, My Life, My Love, My Family, My Cancer
Comments
-
Just popping in to wish the very best today for Mae with her scans and... sorry, I think someone else was also up? I've been monitoring the thread and mentally made a note to post this morning!
Also wanted to wish the best for those going through some tough times on top of all this right now.
0 -
Got a call from MO’s office last night about my next MRI for lumbar and pelvic area. Silly me, I thought that would be 1 MRI but no, it’s 2 MRIs. Sigh. There was a cancellation so I am scheduled for this morning for lumbar MRI. Insurance has not approved the scan for pelvic area yet, it’s under review. So looks like I will be headed out in a short bit for another MRI.
I don’t really understand why the pelvic area scan is under review? My PET scan indicated high FDG uptake in the right pelvic area and that is where MO wants to do biopsy. Seems odd that MRI wasn’t approved first??
Please keep good thoughts for me this morning ref getting situated on the hard surface. It’s really painful to move around once I am down on the surface. Thanks!
Illimae— jumping in your pocket just as soon as I am done with my test. Found a recipe for pocket nachos that I thought I would bring
0 -
You go DG - I swear they make all those scan and radiology surfaces EXTRA hard. I could go out right now and lay in the middle of the road and the pavement would be more comfortable than an MRI or bone scan table. The worst is when they have to get out the little step stool - like FOR REAL? No one could put this thing on some hydraulics? Who do they think is going to vault up here?
0 -
DodgersGirl- In your pocket with Peanut M&M's (hope you are not peanut allergic).
0 -
Ugh I hate this crap -Mel you are so right, they call it a battle for a reason. I had all sorts of doc visits yesterday. Orthopedic oncologist did some imaging and told me I have bone progression compared to October scans which means Afinitor is not working. (JFL I guess I'm one of the APhonyTor people haha)
Then I went to the MO for a follow up with the NP and laid it all out. This is two AI's that have not worked for me. Why are they considering another AI????? At this point I need a machine gun and Bruce Willis' character from Die Hard to fight this cancer it seems to me. Also why keep me on Afinitor for one more day if it is not working. My scans are in four weeks. I have progression in my pelvis. I have possible progression i my lungs. Give it up and give me a break from all the SE's! My MO seems determined to finish the three-month protocol. Ok I will cooperate while I go to Dana Farber for a second opinion. Good lord this is a lot of work and worry and why should I have to figure all this out????
In other news my lungs are clear and the pneumonia seems to be resolved. I can go back to work next week with a close eye on my stamina. NP promises that MO will call me today or Monday with some sort of feedback on this progression.My ortho oncologist and MO don't seem to like each other for some reason. MO sees herself as in charge and did not like it at all when orthopedic oncologist suggested I ask about radiation to my pelvis.. I don't know - this is the sense I'm getting. My MO is great. I picked her for a reason, but all relationships have low points and she and I are partners in a pretty big project here - MY LIFE. As in all relationships there are times we are going to disagree. I trust her judgement and feel comfortable questioning her. She's an oncologist, but winning is not part of her every day life. She loses a lot of patients too. I feel her humanity too and I love the balance between her confidence and her humanity. Right now though, I feel Bruce Willis is needed and I needed to yell "fire" yesterday.
So I go forward with my experience of cancer STILL not getting stabilized. This is an eerie feeling;scary and maddening.
I have some reading back to do and will get to this later after I've done some errands and phone calls and things.
0 -
In your pocket Dodgersgirl with junior mints.
0 -
between the Jr Mints and Peanut M&Ms, I got thru another MRI!!
Since this was my 3rd MRI in a matter of weeks, I walked in like an expert. Well, until they asked me to get on the table. I didn’t see the pillows at the foot of the table. All my other MRIs were head first but this one was feet first.
MRI was fine. But my back pain was very much there thru the test. I asked for help off the table. The 2 attendants weren’t very helpful. I still couldn’t get up so I had to tell them I really needed help to get up from the table. After 2nd request, I did sit up and then slide off the table.
Now just waiting to hear back on rads? Next MRI? Biopsy of pelvic area? I hate being in limbo and not on a treatment. My cancer is eating my bones while I just wait. I have called MO and RO. Lots of vacation days around the holidays. Today’s not over. Maybe I will be scheduled for rads next week
0 -
Well, Brain MRI is done and was followed by my neuro rads onc appointment so I didn’t have to wait over the weekend.
Results are mixed. No new tumors (yay!) but the area of suspected treatment effect has increased. The MRI doesn’t clearly indicate whether there is a new tumor in that area or if it’s growing radiation necrosis. An advanced MRI is being planned for a few weeks from now. Best case scenario is watch and wait or a dose of steroids, worst case is possible new tumor and/or necrosis requiring treatment, either craniotomy or some kind of laser thing. Lots of unknowns but I have no symptoms, so staying calm and hopeful.
Went to lunch after and had an amazing pasta dish, here’s a pic 😋
0 -
love to everyone getting scans or made it through your scans
Mae - ugh! I know that unknown/not knowing is like the WEIRDEST place to hang out in. Modern medicine has made amazing advances but there is still so much that we do not know. I am sending positive thoughts your way for this one. And hooray for a yummy post-scan and appt lunch. I always go out to eat after my monthly MO appointments and after my scans...I am a foodie and this is how I make myself feel better.
Lots of love to all who are not feeling good today and those who are feeling good and everyone in between (I think I am in between here!),
Philly
0 -
Mae, I am sorry the results were mixed. I am also sending my thoughts toward the best outcome. The lunch did look very good though.
No scans until next friday for the neck down. Not feeling different so hopeful my NED record will stand.
Decided to kick my butt out of the house today. Just to get out and go to the dollar tree. I usually enjoy that. I almost missed my bus and I waved him down from the sidewalk. He stopped as he was turning, so I thought I was supposed to get on but he waved me up a bt. He stopped the bus and when I got on, he proceeded to give me a dressing down for thinking he was letting me on at the corner. He almost made me cry in front of all the passengers. No problem to tell me that it would have been better to meet him a little further up the sidewalk. I proceeded to dress him down for making me feel so awful about a mistake and he needs to realize people all have other problems and that being unkind could push a depressed person into a nasty way, or if someone lost someone or in my case having cancer. His mouth dropped opened and he stammered he was sorry. I said that was good, and just to take it easy on people. Surprised I stood up for myself but tired of letting people get away with unkindness around me. I no longer felt like crying. Gave myself a mental pat since I don't often stand up for myself.
0 -
WAY TO GO!
0 -
So proud of you Mara! Thank you for enlightening the bus driver!
And kudos to you for connecting with an old friend and going out to the movies. I think 2020 is going to be your year!
0 -
YASSSSSSSSS QUEEN! GO MARA!!!!!!!!! I love that you stood up for yourself! People sometimes need a good attitude check and reminder that the world does not revolve around them. We are in a climate where we REALLY need to be kind to one another, especially now. So much pain and hurt in the world. Love is healing. Standing up for oneself is beautiful self-love! Way to go!!!
0 -
Good for you Mara!
Mea, hoping you end up getting good news on your advanced MRI. Lunch looked wonderful..Moomala, I'm so sorry to hear that your last scan showed progression. I hate to hear that. Hopefully you'll get better news when you get your second opinion.
0 -
Illimae— sorry you have to go thru an “unknown result” from your MRI. I will be thinking positive for your outcome and vote for watch and see.
What is advanced MRI?
0 -
Mara good job on the bus driver. He'll be nicer to the next person and of course you.
Mae your food looks delicious. Your spirit is killer. Remember I had the pizza in your pocket lol.
Dodgers girl my mom told me she went in her MRI feet first. That's never happened to me. Less anxiety that way but no cushion so it still sucks.
Moomala get your Brice Willis guns 💪. I hate to hear doctors being snarky with each other when it's about me!!! I hope your second opinion has a line of treatment without Non working Al's.
Take care all
Tanya
0 -
Evening ladies.
Busy day for me--the church thing, then banking and groceries. Not doing much tomorrow and over weekend though so I can recoup from the busyness today.
Moomala- Crazy that you have to deal with the 2 oncs disagreeing. Why doesn't the Primary MO defer to the ortho MO for the bones? I would think the ortho MO would have expertise in the bones. You said they did imaging today with ortho MO but scans due in 4 weeks with Primary MO--- what imaging today? and what imaging in 4 weeks? You commented you may here from Primary MO today--did you?
DodgersGirl- Yey for getting thru MRI. Now the results. Thinking of you.
Mae- Oh my, possible progression. Praying for good results from "advanced" MRI. Hope they can do it soon.
Mara- Way to go standing up for yourself !!!
My scans are due next month, Feb. I think they will be ok since the PET didn't show uptake in Nov. First I think "Hey I have been stable so far and the PET was clear 3 months ago (will be 3 months in Feb), so it will be ok after only 3 months". But then I think "But what if in those 3 months the cancer finds a way around the meds and it progresses". First " I am ok" then "what if". Around and around.
0 -
Morning ladies - been following along here and its been tough to see some go through uncertain times. As if all of our background anxiety wasn't enough, to get conflicting thoughts and scans doesn't really help either. Moomala and Mae - I hope better days are soon for you, especially Moomala with that latest illness. And Philly I hope they get to the bottom of what is going on with you too, but that you keep on kickin' ass on the party circuit or in the gym
For the ladies who have found more strength and voice in the last few days - WELL DONE. Mara - damn girl that is awesome! I was so happy to read that. And for Dodgersgirl - I should have noted that a pelvis and lumbar MRI they throw you in feet first cause they only need the bottom bit. I had a lumbar only in 2016 for a herniated disk, only I reherniated it just before my scan time and couldn't unspasm enough to actually stretch out to get on the gurney (thanks raging nerve pain!). Got chided by the doctor for missing the appt but *shrug* I was in literal screaming pain, it wasn't happening buddy. Way to push through and get it done. Boo - best wishes with your hubby and his struggles - not ideal but at least he is taking that step forward.
Hello as well to Mel and Tanja and Scott!
Not much happening here, other than getting sick and tired of being at home
I realized it means I am getting close to getting out in wider society - yesterday I climbed the stairs in my house without needing any crutches, so theoretically I should be able to handle the stairs at the Tube stop. Also the left sacroilliac joint stopped hurting last night all of a sudden, so I put on a coat and went for a half hour walk in the neighborhood since I felt so well. I am hoping to start to go back into the office on very limited time (10-3 or so, one day a week) by the end of the month. First test will be the weekend of 18-19 when I have my writing conference in town with some very fun people. But for today the sun is out and I've got Amazon coming with a bunch of fun new stuff like autoimmune protocol cookbooks, a spiralizer, and new food storage tubs so we can just batch cook healthy things and keep the fridge full for grab and go portioned meals as we tend to eat at different times during the week. I may take a walk over to the docks and see what is up along the river as I haven't been over there in four or five months.And the new litter box has also solved one huge headache of our girl kitty peeing outside the box every 5 to 7 days when she feels slighted about something - and here we had been blaming her brother! No more having to put down newspaper, worry about the wood floors and our deposit, or cleaning up mess with enzyme cleaner (which all fell to partner to do since I couldn't bend). Nope, the Modkat flip top litter box has it under control (really its just a prettier version of a Rubbermaid with the hole cut into it and then a tarp laid in but still!). Such a relief and its a little higher than the normal boxes so I can also get back on scoop duty.
Have a good weekend everyone!
0 -
SondraF—. Congrats on the stairs without crutches and the half hour walk after the pain disappeared from your left sacroiliac joint!!!! That is wonderful progress!! Celebrating this good news with you this morning 🎉
0 -
Moomala,
All of the AIs I tried failed for me too. I know and feel your frustration. They found that I have the PIK3CA mutation, so that’s why we tried PIQRAY. Have you been tested for that mutation (it’s a blood test)? Just wondering because that mutation is why we won’t respond to AI meds. (Please beware of PIQRAY if you are just getting over pneumonia. That’s one of the side effects.) I agree with you....why put you on yet another AI?
Anyway, let me know how things progress for you. Praying for the next treatment to be the one that kicks some butt for both of us. My next appt. is on the 14th with my new Onc. Hoping for better days ahead.
Take care.
0 -
I hope this year brings everyone much needed good health and strength! I know how difficult living with this disease is. The holidays, just gave me something else to do, It brought my attention to something else. Like I was more than just sick. It was a lot of distraction I needed. I have to find a hobby. I took a walk today, to the end of my neighborhood. My spine hollered at me. I hate it when I realize my limits. I’ll no longer go for fast walks or runs. So sad. Why I’ll never know. Frustrating for sure.
Hang in there. We have no choice0 -
Sondra, I am so happy to hear that your pain went away and you were able to get out and walk so much. Also kudos on the food prep as well. Love getting things from Amazon myself. Good for you.
I did not do anything physical today. Washed bed linens and yesterdays clothes. Watched a couple of movies and am watching the first episode of the Morning Show with Jennifer Aniston and Reese Witherspoon. Seems interesting. Tomorrow, I think I will do some cardio. Only thing I was impressed with was that I did total body workout yesterday and really was not very sore today. Had used weights and everything. Was very surprised. Will do that workout a couple times a week I think.
0 -
For anyone looking for a fun hobby (Micmel!) -- lately, I have been doing some embroidery and it is quite fun and positively BURNS time. You have to go kind of slowly and carefully.... and the focus on what you are doing is what makes 3 hours seem like one hour. The only hard part is threading the needles!! Otherwise it's pretty easy. My grandmothers were both needleworkers and got a lot of enjoyment from it; they each made pieces which are treasured by me today. Needlepoint pillows, sweaters, embroidered linens. All you need are 3.0 glasses for the dang threading of the needle...
0 -
Micmel-I too get a lot of back pain if I take a long walk but I have found if I use hiking poles I can walk much faster and farther without any pain. It feels a little embarrassing to use them but they get my upper body involved in the workout. Somehow using the poles seems to keep my spine in place. Today I was able to do a 5 mile walk in the cold without any pain-had to take a two hour nap later but it felt really good. I got mine at Dicks-they weren't too expensive. Anything to "keep moving" as Z used to say. (They also help with stability on slick side walks).
0 -
I am going out on a limb here!
First, my wife finished her target radiation on three tumors in her brain Friday! Awesome. Those treatments really beat her up but she still managed to watch football. But the doctor is ordering a spinal mri for possible LM. She also came down with a sinus infection that got into her upper lungs. Antibiotics for three days then she will start havalen this Thursday. This week is going to be so tough but she is the tough one.
What puts me out on the limb is her parents. I completely understand that Shelley is their daughter and is fighting cancer. How awful to have a child going through this. Shelley and I don’t have any kids so I can only imagine what her parents are going through.
Well, lately they have really been showing their desperation. Her mom has brought up to me, several times, the alternative threatments I mean treatments out there. The one she is really adamant about is the oasis of hope hospital in Tijuana Mexico. Since I am the researcher I look into these things and truthfully I get so disgusted at what I read. It hurts me to know there are people out there that prey on desperation.My mother in law is taking all this stuff really hard and I don’t know how to break it to her about these “alternative” treatments. I feel like,if I keep shooting her ideas down, I get made out to be the bad guy. I am not certain how and, quite frankly, I am afraid to say anything at all. I will do ANYTHING for my sweetheart, and I will always look into everything that is suggested that might help.
I am really stuck. And I hope that you all may be able to help me with this one. Prayers!
0 -
Scott,
My thoughts go out to you. This is a difficult situation.
You might want to peruse this thread on BCO: https://community.breastcancer.org/forum/8/topics/...
It talks about the Jane McLelland book, How to Starve Cancer, in which she discusses many supplements. There is also a website that you can join. However, that thread also discusses (and you can do further research on) the Care Oncology protocol. Some of the posters on that thread are taking the drugs used by Care Oncology in London that have been prescribed by their own doctors. Others are actually on the Care Oncology protocol through Care Oncology -- they have a license to operate in the US. Visits are all e-visits, and they are registered as an official clinical trial on clinical trials.gov.
I suggest looking into these things only because it might let your in-laws have some peace, and it might in fact benefit your wife's situation. It's a very long thread, and there are a lot of tangents on there, but it's definitely something to look into
Hope this helps, and good luck to your wife.
0 -
So much to comment on.... a busy living room we have.
Chicagoan~ I would try anything at this point! I watch the athletes run by, or see the gym where I used to run 6 miles in an hour. I will never except what has happened. I used to be strong as an ox...not anymore. My balance sucks from neuropathy and big guns Chemo. I long to be able to work out like I used to. It's personal breakage. I'll try the poles thank you for the suggestion!
Mara~So. Very jealous ! But you go girl. Work out for us both!
Santa~I so much need a hobby...I was thinking that when the after Christmas blues, hit like a brick! I could absolutely Learn this You tube?video. Perhaps! No one else knows. My DH is great with a sewing machine!, maybe I'll tap his knowledge! Ty for the thought😉!
Scott, It warms my heart to see the love you obviously have for your wife. My DH goes through so much with this. I often feel worse for him. Outside of you and she, no one else could ever comprehend. I always say to my DH. Use that cancer card when you need to. She's earned the right to say what is and isn't done. It's no one being bad guy, except who should be, cancer. I learned who would be unconditionally there and those who wouldn't! It was crystal clear. Don't make it harder on yourself than you have to be. It's already hard enough. She needs you, and frankly no one else matters. The family can help, but it won't matter. They have no clue. People's thoughts an opinions don't matter at the end of the day, when you're tucking her in at night. Like my DH says. We cut out all toxic relationships. Even if they don't know it. Keep them at arms length. Use things like. Oh. Her counts are low, can't risk sickness, she's not feeling up to visiting. Truthful statements, no lying. Just honest truth. Hang in there. I don't know why family especially thinks they have more say for some reason. I'm sure they are concerned, but boundaries must be set! Sending your wife hugs of strength and support, from a far. ~M~
0 -
hi dear ones!
Scott - I would like to chime in, if I may.
For me personally, nothing made me (and still makes me) more bananas than people telling me how to cure or beat this disease. I have had to very clearly state boundaries with dear loved ones and say to them, “please do not recommend supplements that I should be on, or anything like this as alternative treatments/cures. I am in great hands with my oncology team and I trust them. If I need your help, I promise I will ask. At some point I may ask you to do some deep research for me. But for now, I need mental space to wrap my head around all of this. Thank you, I love you!”
That seems to work. If they keep pressuring, you may have to set stronger boundaries.
I felt so lost and scared when I was first diagnosed that I actually only allowed a couple people to contact me about my treatments and to gather information. They were then allowed to share that information with my inner circle of loved ones to let them know how I was doing. I asked them to form a protective bubble around me so that I wouldn’t have to deal with all the annoying questions and having to repeat myself over and over. I had PTSD from the diagnosis and talking about it over and over reignited my trauma every time.
You may be experiencing a similar thing, with regards to ptsd from the diagnosis of your wife. I do recommend having someone that you love and trust and who respects your boundaries and privacy be the “go to” Person to relay information to your people. They can handle any of these annoying inquiries for you, so you and your wife can focus on her healing.
With love,
Philly
0 -
Scott, the spinal tap, while a scary thought, is easy. I had one for a spot that was in a suspicious area but turned out not to be lepto.
The desperation is understandable but I’ve seen the Mexico clinic provide so much (presumably false) hope. I say this because it’s been mentioned with excitement on BCO and Facebook pages for years but only by those interested, not those who received treatment. I figure the silence that seems to follow is because the patient either passed away or does not want to be a known victim of a scam.
I was told to put “nih” behind anything i search to get real research into not just random blogs, they might want to give that a shot.
0 -
Illimae.
Thanks for sharing your experience. I will use it for sure.
Shelley and I have a securely reinforced set of boundaries so that she doesn’t have all the information overload. I research and if there is something important, or game changing we talk about it first. Then wait a day or to before we open that door. It has protected her from and us from some really nasty people. I just don’t want to discourage her parents in any way but I also don’t want them to waste useful time following someone down a rabbit hole. The last time I put my foot down turned ugly and I didn’t approach them in an empathetic way.I am ok with telling them “no I have looked into that” but over and over is hard. I love them but I love Shelley a whole lot more.
On another note more football today. She wants my homemade double decker tacos. So grateful her appetite has returned.
Prayers to you and everyone.
0
