My Husband, My Life, My Love, My Family, My Cancer
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Candy: Familysearch.org is a free genealogy service. Some of the info is a crossover from ancestry.com and you can sometimes locate another who is researching the same family lines. Give it a try. Doing genealogy is like trying to solve a mystery or a puzzle but remember there can be missing pieces/clues in both. It can be really engaging to try to track your history. Give it a try.
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For those of you who are interested in genealogy, FamilySearch.org is free. You do need to create a sign in account but there is no charge and you can search to your heart's content. I'm happy to answer questions, I teach genealogy classes and have searched my family for several decades. Warning: it can be addictive!!
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Forgive me if I posted this already, sometimes I forget what I said :-) I did get the official word from my MO that my scan was negative. I'm a little more comfortable telling people I'm in remission now even though it doesn't seem real. I have work tomorrow and Saturday and then Sunday I will be packing to go to Arizona for a week. It's been more than a year since I've seen my family in the Phoenix area and I'm excited about that. Travel will be interesting post COVID and I'm not generally fond of flying so I have a few nerves about that. The rest of it I'm excited for.
I feel the loss from the past too. My mom was looking for a photo to include in a card for my cousin's graduation. It's a mix of emotion, both sadness and awe, to look back over life and marvel at how much has changed. I'm 43 and it feels like yesterday I was in my 20s and this graduating cousin was just a baby. I will say I was an idiot in my 20s and I am grateful to have some years of experience behind me now. Still, It all goes so quickly and certainly cancer for me has highlighted the importance of prioritizing those things that are important. I have a friend who was just diagnosed a few weeks ago. She has stage 3 IDC and starts chemo today. Her youngest is only 18 months and she's devastated, as we all were when we got this diagnosis. She's keeping a binder of her treatments and reports and all of that. I told her to include a journal and to write one thing every day that is positive or funny or grateful. It sounds like a cheesy but that is how I survive all this. It's such a complete and utter medical mortar blast to our lives living with cancer. If I didn't go looking for that one thing in every day I think I would lose my mind. Anyway, I just put that out there in case it helps anybody else. I wish I could just reach through the screen and give you all a big hug or at least a fist bump for those of you who aren't huggy people. I get it.
BTW - Mae that is an amazing bird! How fun!
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had chemo today, home now & just finished lunch. My port was being stubborn about giving blood return and I had to do all the exercises and coughing and arm swinging and finally she had to find a stretcher and recline me head down on an incline and then it worked. I have immunotherapy tomorrow and was worried about this happening there so I got them to just leave it accessed and heparin locked. Hope it doesn't bug me when I sleep tonight.
Just saw my tumor marker is creeping up too so I don't think the scans are lying, I think this line has run its course
in happier news, next weekend is the May long weekend here & the Eurovision final is on Saturday!
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Emac - I may try your journal approach!
Boo - try a needlepoint kit (I do tapestry ones with wool cause cross stitch bores me)- its like coloring books/paint by numbers, but with thread! Honestly it allows me to just zone out and concentrate on something and let questions drift through my mind, usually about things in movies or tv shows (like, did Scarlett ever consummate her marriage to Frank Kennedy? Is Demi Moore's early 90s hair style likely to come back?)
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I had a nice visit with my daughter today. We laughed a lot about her childhood experiences and the funny things hat I didn't know about. It was a lovely day outside and we sat out under the tree for a good few hours. We both said somethings that needed to be said. It was a nice day and one I needed. I laughed until my sides hurt. I enjoyed myself . Just what I needed.
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Mel, this is good news! I want to hug your daughter. You give her a big old hug for me, okay?
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Micmel, it's so nice to hear that you had a good day, yay!
Emac, congrats on the scans and vacation
Hello to everyone
We just hit the road for the cabin, hopefully we get there (10 hours from now, ugh) without any truck/towing issues. I'm pleased to try out my new snack pack.
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oh cute mae! It's like a tiffin box
Mel glad you had such a fun visit with your daughter!
I had an appointment at the infectious disease clinic this morning trying to sort out my recurrent UTI issue. They've given me a new antibiotic and they will send a recommendation to oncology to start me on vaginal estrogen 2/week but nobody is sure if MO will agree to that. Btw, if you've ever seen social media memes about infectious disease and how they take a medical history... they're all true! I was there for.ever. and we covered everything lol. It was kind of fun. I had a student too and he was extra thorough.
I'm home for a rest and lunch and then I have go back out for the immunotherapy infusion. I'm so tired already lol.
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Mae - that is super cute, where did you get that?
Rain and high winds continue here, its driving me nuts. It feels as gloomy as October and next week looks just as bad as this one. We are calling off our much awaited trip to the US for June - the govt shennanigans around travel were driving too much anxiety and the easiest thing to alleviate that stress was to bite the bullet and accept its not going to happen. Unfortunately that disappointment spilled out at work and I blew up over my annual review so we are going to reattempt it in a few weeks- on the plus side I do feel better having let it all out. Maybe I should talk to my GP about getting a valium script for every once in a while use.
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Sondra, I bought it online through Old Navy, only $12. I got an olive one for DH, so I can send him off with snacks when he goes camping with friends. It's great so far.
edited to add that we just stopped at bucee’s (bid Texas travel stop/store) and left with a box of assorted fudge, probably about 20 bite sized pieces, delight in every bite! I’ve tried a key lime pie one and peanut/caramel, yum.
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booboo: try sculpting with Paper Clay. Did you like playing with plasticine as a kid? It is like that. But your finished product airdries, can be carved, sanded, painted. You don't need fancy tools. I have tools from my days of poly clay before my hands got too weak for kneading it but you can use all sorts of things to use as a tool. The Dollar Store also sells tools that you could use. Check Pinterest to see what folks do with air dry clays. I find turning a blob of clay into "something else" quite therapeutic.
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Hope everyone had a nice Friday. I’m hoping for a nice sleep and maybe not waking up nine times. It’s my own fault. I love water.
Mae~that looks like a handy thing to have I would absolutely use one myself.
I haven’t been myself lately. Really tired. Blah about everything. So today I tried to sew a little. I has so much fun. I got up and did something. Felt better after. DH is away this week. So I miss him buzzing around. I adore that man. Hope everyone is doing ok. I’ll be ready bright and early for my second covid shot Monday. Ugh! My birthday is Tuesday. And any pocket duty as well! Hugs to all0 -
Mel- Glad you are sounding more upbeat. I will post my "pocket duty list" this weekend for next week. Happy early Birthday wishes. Hope you continue to feel more upbeat.
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Thanks everyone for sharing some cool ideas to keep us active. Elderberry, I've never heard of paper clay sculpting, but I'll definitely check it out.
The other thing I do every day is to try to find something to stimulate my brain. I play a game called “Seven Little Words" and it can be a real challenge some days.
Mel, I am so happy that you got to spend quality time with your daughter. Nothing better than that. It sounds like you had a heart to heart discussion, and I hope anything negative that may be standing in the way of your relationship is gone.Mae, I love it when you post about your road trips and the yummy things you find along the way. I hope you and your DH have a great time at your cabin.
I'm still in healing mode, and can't wait to ditch the walker. I have used the cane, but am not quite comfortable yet using only the cane. Each day seems to be a little better than the day before, so I'm looking forward to walking on my own again. My MO is starting me back on Abraxane again this coming week, so back to the grind. Hoping I see some good results next scan.
I'm here for pocket duty too.
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booboo, I love Seven Little Words. A friend told me about it and I play it almost daily. I also like "Flow Free" where you connect the colored dots. I'm totally addicted to that one. Word Trip is another fun one. I usually just play the free versions, but I've "upgraded" to the ad-free version on a few of them.
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BooBoo~I hope you can ditch the walker soon. Canes are harder to use than you'd think. Safely takes practice. My mom was a whiz with that cane. Slowly went to walker now. I just want you to heal up and be able to do what you want. More chemo means Pocket duty.. I hope it kicks cancer ass. I had Abraxane too. Whipped my ass. You’re a Strong lady. I had 9 full strength rounds. I stopped because of neuropathy. I hope it doesn’t bother you !!
Candy~ I consider you our thread secretary, always on top of our sister's regimen. Special of you.
Hope everyone else is doing good this Saturday.
Talk with daughter was filled with love and her realizing how hard life is and she’s not perfect. She said I’ve been a great mom and she felt lucky. It helped to hear that. She said she thinks I’m strong and she hopes I live 25more years. Even if I don’t. It’s nice to know your child wants you around. Especially after the small but large pothole we drove through and blew out all four relationship tires. We’ve healed them. She and I. I’m happy for that.
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is seven little words an online game ? I’ve never. Heard of that. ?
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Boo - that first switch to cane is like "whoa! I dunno bout this...." I practiced at home with it for very short distances in the house at first, and then in the local area before I even dared venture out greater distances. It felt so unstable compared to crutches! But after a while and building confidence and some more balance and strength it was no big deal and eventually I started forgetting it at home. Sounds like you are doing great!
Mae - I found a similar item at a shop today, but I wish it had that nice little handle on the top like yours. Oh well, something to put good snacks in for days I decide to deal with the office.
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Mel - so happy for you and your daughter. I’m so blessed that our girls & spouses want us in their lives.
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Mae - love your little lunch doodad.
Moth - it might even be helpful to smear hormonal cream on the outer parts of your lady bits to help the constant bladder infections, that might avoid some of the worry of you shooting it up the hoohoo. I am prone to bladder infections and find that a night or two of smooshing a tiny dab of Premarin cream around seems to be helpful. Bladder infections suck.
I had my phone meeting with the gynecologist finally. It went like this:
Me: So what caused all the bleeding?
Doc: I'm not sure.
Me: Was it that monster sized polyp?
Doc: Could have been.
Me: Will the polyp grow back?
Doc: It might.
Me: If I continue to take tamoxifen, will I have more episodes of this crazy bleeding?
Doc: It's possible.
Me: The ultrasound said I had a 2cm thick endometrium, how freaked out should I be about this?
Doc: I found no evidence of that.
Me: (extended silence)
Doc: ultrasounds can be wrong and are not reliable diagnostic tools all the time.
Me: What is stromal fibrosis?
Doc: Something pathologists write on reports.
Me: The path report said I needed close clinical follow up. What does that mean?
Doc: I'm not sure. I don't know why they write that.At this point I realized we were going nowhere. Or, put another way, aside from some bizarre and epic bleeding, my uterus seems alarmingly normal and boring and without evidence of disease. As such the Doc is on thin ice if she up and says, yes, let's yank out a perfectly healthy organ. So we were dancing around an issue and it was up to me to focus the conversation, which is what she was waiting for. I am a stupid patient and slow on the uptake. I changed my approach.
Me: My oncologist is making noises about me being on tamoxifen for 10 years instead of 5. This is news to me. I am reluctant to go on an AI due to bone density issues and the fact that I know the misery of tamoxifen and am not excited about getting to know the new miseries of a new drug. In light of the continued risk to my uterus from tamoxifen, do you think it is reasonable of me to be concerned about this?
Doc: Yes.
Me: Would you be willing to remove my inside parts if I felt it was something I wanted?
Doc: Absolutely.
Me: Does it all have to go or just some of it and can you do a tummy tuck and lower eyelid lift at the same time?
Doc: You can decide how much parts you want to lose or keep and no to the other stuff.
Me: Do you do vaginal hysterectomies because I watched some on Youtube and holy shit it freaked me out!
Doc: I do laparscopic hysterectomies. Stop watching surgery on Youtube.
Me: Can I call you if I have more questions or concerns?
Doc: Yes. You have 6 months to decide and then you aren't my patient any longer. Wait times are 2 -4 months so give it some thought and let me know.
Me: But I really need my lower eye bags removed!
Doc: Bye for now.So. I have to think. It makes sense, I think, to remove potential trouble now rather than when I am older and heal less well. Uterus has sent up one flare already that all is not well and likely to go bonkers again at any time. Or not. No one can tell me what to expect. Well shit.
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runor: well wasn't your doc illuminating! (she says sarcastically) I am with you. Rip that damn thing out! Do you still need it for babies? Where is your doc going in six months? I guess with docs you have to say "My choice. MINE," so the doc is off the hook. But he is right "Stop watching Youtube" ha ha ha That is like staying off Google when getting a DX.
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mel, 7 Little Words is an app on my iPhone. I don't know if it's on the computer, too. I do enjoy it, though.
runor, SHEESH!!! Nice conversation with your doc. I say schedule that hysterectomy NOW while the conversation is fresh in your doc's mind. 2-4 months out. Even if you scheduled it now you'd have time to cancel if you change your mind.
My hysterectomy surgery was the best day of my life (well, almost). Glad to get rid of the useless real estate. I wish I had thought to have them take my cervix at the same time, but oh well. I kept that and my ovaries.
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Hello to all. Well my "pocket duty" list is short for this week. So chime in if you have anything this week and need our pocket duty.
Sondra- CT results Monday.
Kittykat- Blood transfusion and chemo infusion.
I am going to do the gaming in-person this evening. Me and 3 other people--- all of us vaccinated. Going to 1 members home. I will still mask. The others don't have to--- I will tell them that. Out of practice on this socializing thing. Usually my outings are doctor appointments. Seems strange.
I have been posting a lot on the Liver Met Thread and the Ibrance Thread. I have been researching my biopsy results and my conversation (by phone) with my MO. I have changed from ER+/PR+/HER2- to ER-/PR+/HER2- in at least 1 liver met. Next scans are June 25 and we will decide next treatment. Looking at a PARP. Still have a lot of questions.
Hope you all are doing ok. I check this Thread at least once a day, if not several times a day. You are my peeps.
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Good morning from west Texas (this is the calm before a day of work)
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Lovely view Mae. I hope you have a great time tonight Candy. I'm having a blood transfusion and chemo this Wednesday, my hemoglobin has been too low for a couple of weeks and making me short of breath so hopefully this will help.
I'm here for pocket duty for who ever needs it. Enjoy the rest of your weekend no matter what you've got planned.
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Beautiful view, illamae. So tranquil. Funny, but the older I get, the more I long to move to the middle of nowhere, without another soul in sight. How close are your nearest neighbors?
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trishyla, technically, the nearest neighbors are just a few hundred yards up the hill but they’re only out here a few weekends per year. Most full time residents live down in the valley area but even there, it’s very sparsely populated. There’s about 200 home sites and we’re all about 30 minutes from town, which has a population of about 1,200. “Rush hour” is seeing 4 cars, lol and there’s really no need for masks. We’re having dinner with a neighbor/friend tonight and he only goes to town once every couple weeks, so he’s pretty safe.
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Elderberry, Sunshine, I agree that the talk has left me with little guidance other than she is willing to remove inside bits if I want. I still don't know why I had that bleeding. I need to make a decision and there are concerns and questions and I don't know what to make of it all. Still 'thinking'.
Hi to everyone. In pockets all over the place. Enjoy the day!0 -
Mae, that is a nice view. We are slowly progressing to opening our province as well. Outdoor places are opening up as of today and we are doing a slow phase of opening, starting at 15 percent total customers at each non essential store that has been closed and if the numbers keep going down, increasing to 25 after 3 weeks I think. We are behind US in percentages vaccinated but slowly getting there. The first Pfizer does made me sick for a few days, skipped my Herceptin as it just piles on fatigue and sinus issues. Figured going an extra 3 weeks without a dose won't cause me trouble.
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