My Husband, My Life, My Love, My Family, My Cancer
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oh, okay, thank you Santabarbarian!!! It sounds interesting... I’m going to google it..
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Good evening everyone. Such a crazy busy time these holidays, and so bittersweet this year. We are working on organizing our decorations, which has been a huge time sink. In the middle, finally had my CT scan - a month overdue no thanks to the insurance company. Stable results, so holding my own, but the transition between PET and CT was disappointing, since I had a huge reduction in activity between the first two PET scans. We had a nice quiet New Years playing games with DD and DS. I did manage to stay up and then slept really late the next morning. Finally got the stollen baked. Talked about it for 3 weeks before I had the energy to tackle it. The oven is wonky though, so some challenges with the temperature. But it tasted really good and vanished quickly, so you can't ask for more than that. DD and I are going to try to bake more bread since we had such fun with the stollen. Hope I can find the energy for sure!
Fingers crossed for a great year for everyone!
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Illimae— I think you raised a very valid point that the area is stable. Let us know when the enhance PET will be. I thought we might fill your pocket with water and go swimming while we do pocket duty.
You’ve got this and we are all here in your corner.
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Dodger's, I think you will find that if Mae has a pocket full of water it's because she's raising crawfish and lobster in there! Reading always Mae and hoping for news that makes you happy. Same for everyone.
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Runor— a Texas Lobster Ranch in Illimae’s pocket!!
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Hahaa! You gals are awesome. This whole having cancer business wouldn’t be nearly as much fun without you. 😆😆😆
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Mae, Its because you’re a pretty special person yourself and. Always support your sisters! It’s the doctors I could do without . I have to get xgeva next month. Yuck!
Hope everyone’s having a good start to your weekend. DH is up. I’m a happy lady. He’s having a bought of gout. So he’s in major pain. It’s awful!,
Hugs to all! ~M
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Hi all . Been offline for a couple of days. Busy.
Well the lady I have been covering for with the church secretary thing is not coming back to the job. So... I will be assuming the role of our church's secretary. Since I am doing it voluntarily, they said I can set my own hours. I am thinking Mon, Thurs, Friday 8:30-noon. Gives me Tues and Wed to chill and not have to get up thinking that I have to get ready to go out. And with doc appts and other things it is not too much. The other person did it Mon- Friday so there is a learning curve for all, that I will not be in the office every day. Also, with the MBC (the church members know about the MBC), they, and I, want the job to be transparent and simplified. So if I get to where I cannot do the job someone can jump in and know where I keep things and what needs to be done. I know I cannot do the job forever. The last lady had the job over 20 years. I just pray that God allowed me this opportunity to tell me " You have some more time. I am not done with you yet".
It is good - Mara and Mel- to have a "job", hobby, or something at least part time. But yesterday morning I had a moment while getting ready to go to the church. Tired and the emotions hit of the reality of the situation. Had a bout of crying then dusted myself off and started the day.
Today resting and catching up with BCO.
Hugs.
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Congratulations Candy! Sounds like it will be a good situation for you. Everything I do at this point is volunteer also-I prefer the flexibility to the money. I like your idea of having others also trained to do the job so that you don't feel overly burdened.
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Thanks Chicagoan. Money would be nice, but the flexibility is more important--or as important--right now. If I have doc appts or just don't feel well, I can tweek my hours. My outlook on things has definitely changed with this diagnosis. Also, the previous lady left the job due to complications after surgery, so she didn't have the chance to train anyone. They want it where if I have to leave suddenly, things are organized and someone can jump in. I plan on typing out several "cheat sheets" so the next person won't struggle to find the things needed to do the job.
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Candy, Three half days sounds like a good amount of volunteer time, and a nice time donation to your church. Hopefully the routine works out for you, and the flexibility to adjust your hours sounds like a real plus.
I had my mri on Thurs., thanks to anyone who came for pocket duty. It was almost all breath holding sequences (looking at liver) and some were pretty tough! It was my first one in a mobile unit (trailer) which was not much different. My appointment was postponed a week til the 20th so I hope I get a quick call on changes from my MO office. Right now I’m not feeling that stressed about it, but chances are that will change and I’ll be calling to ask for some info on it.
SoccerMom, the stollen looks delicious 😊.
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Good for you Candy. I am not fully there with a job yet. Would have to look into volunteering first once my CT results come back, most likely the 15th since I have an onc appointment that day anyway.
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Candy you are a STAR! I’m just about to retire and looking at volunteering. There is a huge part of me does not want the timetabled regime after 33 years of teaching and meetings. But I need some structure to my week I’ve discovered. Will fill you all in when I find it!
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Morning all, just checking in for the week here-
Feeling much better on the 100 Ibrance with FAR fewer muscle and joint pains. Pelvis keeps getting stronger, and I'm now up to 45 minute walks around the neighborhood. I saw places yesterday I hadn't seen in six months and it isnt that far from the house. I leave crutches all over the house as I am mostly down to one, if not none, at home. I'd really like to get down to just one when out and about, in the next two weeks. I lost a lot of muscle since June and it looks like I am putting some back on.
What I AM still having a problem with is the 'heaviness'. I started feeling this in my right (bad) side, getting out of the pool, last March. Like gravity has been increased on just my body. And its more than my legs, my chest and rib cage feel heavy, along with my back and shoulders. Is this fatigue? It goes away if I take Ibuprofen (and I've been cutting that way back due to less need) and seems more prevalent if I am at rest (sitting at desk, laying down). I don't really feel a need to sleep necessarily either. My blood pressure is right in the middle of normal. Can systemic inflammation do this? Probably time to look at really cleaning up my diet - its not terrible, and I was raised to 'eat right', but time to get drastic with the sugar and bread I suspect.
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Sondra, glad to hear pains are diminishing and that your pelvis is stronger. Your heaviness can be caused by quite a few issues including anemia, restless legs (though you are mentioning other parts of you body etc so not likely that). Fatigue definitely can be an issue. I know when I am tired post infusion, walking home from the bus stop, my legs get that heavy feeling too. I found an article you can look through that might help explain your issue.
https://www.thedailybeast.com/10-reasons-youre-exhausted-and-what-to-do-about-it
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I am doing well today except I can feel a cold coming on. Killing it early with ibuprofen and Buckley's mucous. Walking for 15 minutes after meals since I wanted to get some more cardio.Aids in better digestion for me. Because I walk back and forth so much with laundry and housework, I do get 8000 to 10000 steps anyway but decided need to still have some cardio.
I also decided to stop keeping track of steps and break free of my obsession with it. I can obviously tell if I have been active or not. It is very freeing to me.
My DB came by and dropped of donuts for me, boston cream which are my favourites as well. Yummy.
Hope everyone else is doing well today.
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Ah thanks Mara - its probably a bit of anemia (drugs) along with difficulty sleeping lately. I can fall asleep but not stay asleep, or go back to sleep but not feel like Im asleep if that makes any sense. They are also checking my thyroid this month too.
I have done that first one before - overtraining - and this does feel a bit like that. In fact, Im pretty sure I never got my go back 100% after that episode, and that was 15 years ago!
Going to go with a half caff for my morning cup of coffee tomorrow as I've been feeling anxious the last two days for no reason, but all the symptoms.
I still got out for my walk and went much longer than I expected, so that was positive at least. Felt better after getting some air and stretching my upper back a bit.
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Hi all.
Sunday afternoon with laundry and resting. Doesn't look (right now) to be a busy week coming up---no doc visits or major appts. Thinking of all with appts this week-Mara and Boo I think. Sorry if I forgot others. And Philly should hear about PET approval. I pray we all have a good week and keep the germies at bay (Mara).
Hugs from here.
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Ha Ha that is true Candy. I already feel better. Just about to get lunch and walk again. That is helping along with the advil. I get my scan results Wed but not overly concerned as not new seems to be going on for me.
I also found this funny little joke to share
I checked into the Hokey Pokey clinic.......and I turned myself around.
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Hello ladies! Busy weekend with gorgeous weather tried to get outside. Can’t believe it’s 65 in January! Crazy ass shit there huh
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I don't mind the lack of a lot of snow and warmth myself. I am sure I will get a ton of snow later. Personally, I would rather have really cold weather instead of snow but the lack of snow could promote dry soil later. We will see what happens. We could wind up with a lot of snow and cold even going into April.
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Hellooooo!
This morning's wind was ca-razy over here! Wow! Then it got super duper cold so I'm bundled in a blanket staying warm and thinking about a tiny nap before dinner.
January has been tremendously busy and is not letting up. I went back to work this week after having three weeks off. It was hard to go back but I love my job so it was good too. I only teach 3-5 children a day (I'm a piano teacher) so it's a super easy schedule.
My doctor messaged me the other day that I tested positive for P13Kmutation and would I please re-consider the Piqray. Ugh.. She said that testing positive for P13K can be a reason that ibrance and Afinitor did not give us a home run response. So luckily I have made myself an appointment at Dana Farber in Boston for a second opinion appointment with someone I researched. I will have time to consider all this. Maybe even a week off meds to let my body recover after the SE's of Afinitor.
So, scans this week. MO next week. Boston the week after that. And a large, very large piano festival with preparations all month and the festival t the end of the month. You'll never guess the chairperson - yes Me.Next week is DH's birthday and the grandgirls' birthday and my daughter's birthday.
January is always so crazy!
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Candy,
Yes ma’am. My appointment is on Tuesday afternoon, and I can’t wait. Looking forward to meeting my new MO. Will write once I know what my next treatment will be.
Moomala, yes, you and I must have the same physiology. If you do decide to try PIQRAY, just be aware of the pneumatic side effects. I’m going to ask my new MO about other drugs that treat the PI3K mutation since I had to stop PIQRAY. I’ll let you know what I find out.
Take care
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I hate it thatwe already know what the treatments do to us? What do they think that a lollypop would change our minds on a different day? It's sooooo mind bending. They don't have to go through them. But we do.
My DH took me to the mall Saturday to exchange something. The mistake he made was just dropping me off. I came back smelling like a perfume sample and had on poorly administered make up . I also got stuck by mistake in bath and body works, completely not my fault. They handed me a bag. Not a good idea at all! $25 later I'm walking out. He was like. What happened in there? Lol. We had a good laugh. We needed it. He is having a bad case of the gout. So he couldn't really walk. . Then I made the dash to the perfume counter, which I love!! Have a bday request already lol Darn malls. It was fun. But ghost town. I wondered how they stay in business, competing with online. Seriously barely 100 people. Weird feeling. Kinda.
Hope everyone is well. Love to all!
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Happy Monday beautiful Ladies! I came to say Hi and Micmel's living room has such a lovely smell of perfume
Wish me luck, surgery #2 tomorrow. Next month surgery #3. Ay! Three surgeries in less then 6 months.
I will never complain about dentist appointments anymore, at least cleanings are every 6 months 0 -
Hope everyone is having a fine day.
Micmel. Your story reminded me of shopping with DH at JoAnns. I went in for yarn needles to complete knitting projects and walked out with a whole lot more. Good projects to be sure, but I so relate to that story!
Good luck tomorrow Lilly! Hope it all goes well.
Mara. Your step count has been an inspiration to track mine more closely. I can see a pattern of doing well early in the Ibrance cycle then a definite fall off during the week off. So much harder to get going, and so many more naps!
Booboo. I hope the new oncologist is great! It was so difficult for me transitioning care, even though my new Doctor is so much better!
Fingers crossed Moomala!
Candy--Hoping everything works well for you taking on more with the church. Many warm memories there as my Dad was a minister and we basically grew up there. I don't miss the insanity with services at Christmas.
Illimae--Thinking of you and hoping everything is stable!!! Your cooking has been an inspiration to try new recipes here.
Thinking of everyone and hoping for stable results all around. Stupid disease.
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Hi all.
Well today I had some banking to do. I went in to the lobby--couldn't do from drive thru. I was wearing my mask-- germies are abundant here now, lots of flu and stomach illnesses. One of the ladies moved me to her office to complete my banking business- opening a new account. She noticed the mask and we got to talking. She told me her 77 year old mother was diagnosed with ovarian cancer and it has spread to lungs, colon, and lymph nodes. Then as I was conducting my business opening the new account, she asked about a beneficiary for the account. I told her I had a will and I thought the executor would come in and they would release the funds to them. She said Yes, but easier if beneficiary noted and then all they would need is a copy of the death certificate and their ID and the funds would be released---easier.
It kind of hit me, we are talking about MY death certificate.
Wow. Not much more to say.
She was really nice. She said she would hug me, but would refrain due to the germs. God bless her and her mom.
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Bad day.... went to H&P appt (maint chemo), P not approved, called insurance company who said my policy was cancelled. What?! Group call now with insurance and the employees retirement system (ERS) who pays ins. ERS tells me I’ve been officially terminated, WTF?! Leave crying without treatment and call employer, HR tells me with a retirement date of 12/31, termination in the computer was required regardless of the fact that my application is still pending a completed doctors form. 55 minutes on hold with ERS to get a continuation Cobra policy form, which I promptly overnighted.
Hopefully, it’s all handled this week because it looks like I’m scheduled for a Craniotomy next Wednesday. I read that they drill into my skull for that, so, yeah, major freak-out. 🤯
Mara, thanks for your input on the brain mets thread, it is calming me down some.
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Mae- So sorry you went thru all that with your insurance. You did not need that drama. Prayers for your surgery next week.
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Hugs on all that other insurance mess going on Mae and what you went through. I know a drill going through the skull sounds freaky, but overall, it is a fairly easy surgery. You are in good shape too so that always improves matters. As was said on the brain mets thread, the steroids are usually the worst SE but you don't have to be on them super long. Also, there will be parts of your skull that will feel strange. You may have to be careful if using a brush.
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