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Anyone starting chemo August 2016?

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Comments

  • caligirl55
    caligirl55 Member Posts: 407

    Dara ... That flight school is darling ๐Ÿ•Š Hope your back pain is improving!

    Speaking of .. My cousins husband left his secure job for a pilots position with I think Herizon airline part of Alaskan airlines.??? ... in the midst of investing a lot of money living in Washington while his family is in OC this Covid hits and it has been a very unsettling time. So many out there with crazy situations. I'm glad California is opening up..finally go to get a pedi.

    Lyn...you are so funny... Now I'm hearing my seroma music in my head ๐ŸŽผ hope you pain is getting better. But if your like me one painful area gets better an another pops up so whatcha going to do??

    Y'all have a good week.

    Hugs ๐Ÿ˜˜

  • vlh
    vlh Member Posts: 766

    Hi, Ladies!

    A quick check in to let you all know that I'm thinking of you and hope all is well.

    One of my classes is finally running so I've been busy trying to refresh my memory on the stuff I learned several months ago & never got to use as class after class cancelled. It's a lot of work for only 15 hours of income, but anything is welcome.

    Share an update when you get a chance. ๐Ÿ’“

    Lyn

  • ajbclan
    ajbclan Member Posts: 396

    Ok holy cow I haven't been on here in months! I just re-read everything but of course I'll never remember to touch on all of your messages! So...fires- glad those are getting better (right?!). Cali- always wanted to check out those lakes up there! Darn it. Kelly/Kechla- wow- I'm sorry I never responded- I can't imagine going through a storm like that. Your damage sounds enough and then all the disruption with the remodel! I'm riding the senior disappointment ride as well....very up and down. Mine sees a therapist every other week and for some reason the therapist gets the up time lol. Typical. Shea got her drivers license in Sept. The week prior to the test, we got backed into at Target. Car was in the shop for a week, brand new bumper. One month later (Tuesday) Shea was driving home from her therapist (Lol), got bumped from behind- panicked as she said "they don't teach you where to pull over or what to do" and drove home! So....once again I get the crying teen and the therapist gets the happy go lucky lol. She's fine, and that's what was important.

    Gals- I think this has always been the place we are free to complain about our bodies. So don't hold back lol. It's frustrating.....we just aren't the same. I guess age plays in but still. So- 4 years ago we were complaining about food tasting bad, side effects, etc. 4 years geesh! And remember all the talk about how to get our hair growing again?!!

    Thanks for the chuckles and smiles on the zoom classes and even the politics.....feels never ending lol.

    So I just found out today that one of my best friends will be having I guess 2 lumpectomies on Tuesday. She's one of those private people that tell you things after the fact, so I have to feel lucky she has told me before it happens lol. She happens to have my surgeon and will talk to my oncologist so I'm confident in her team lol. But like you said Dara- I'm guessing it's DCIS as "they caught it early" is the talk- husband told me today Stage 1. Cancer on one breast, the other is showing a-typical cells so think they're getting rid of that spot. He said she's concerned about her underarm scar lol. I'm like- happy to show her mine. WHICH- by the way- it's still semi- numb there so no pain. I think she wants to discount what's happening- that it's not as "bad" as others. I told her husband she shouldn't discount- she deserves whatever feelings she has. She can't compare that it's "not as bad as others". All sucks. And as we know and you said above, it doesn't mean it's done.

    Me: Spanish class- dropped lol after the first orientation. She didn't seem to teach, given a lesson and I would have had to look it all up?? No. I did do another Coursea course on contact tracing. I'm doing Dulingo on my phone for Italian! Some day....Italy is calling. I just watched Under the Tuscan Sun...such a cute movie! I had never heard of it.

    VLH- you always make me laugh- hope the classes continue to pick up for you!! Time to get out of the 80's!

    Wish you all well!! Yes- we have 1 year to "plan" a gathering!

  • ajbclan
    ajbclan Member Posts: 396

    Hi Ladies- quick question for those of you that did radiation! I have a friend starting after basically 2 lumpectomies (one in each breast). She's a very private person so I don't know the details, but sounds like it was atypical cells on one side, and DCIS on the other. I'd love to put a little gift together for her, and was thinking some things to help with radiation? Any ideas? I was looking on the radiation site- things like aquaphor and oils? Someone said t-shirts to wear because of the greasy treatments? Any good ideas on what to wear there and home? Or anything else she might enjoy in recovery? Thanks!!!

  • kechla
    kechla Member Posts: 181

    Some radiation recommendations: A (clean) tube sock filled with corn starch (great for absorbing moisture and keeping skin dry). Some tiny plastic travel jars with lids filled with virgin (not extra virgin - too coconuty smelling) coconut oil. Found in the cooking aisle. This was what my radiation oncologist recommended and it was my favorite above any other lotion or ointment. Best to start using it from the very first treatment (after treatment and 2-3 times a day or as much as needed.) The little containers are great for having in your purse. A couple men's soft white t's (undershirts) to roll up and put wherever some distance is needed between skin (under breast or underarm).

    I hope everyone else is doing well. Dara, I love your flight school sculpture! So cute.

    My life is upside down. In addition to Covid and the Derecho, my dad had a stroke about 6 weeks ago. He was in ICU for 5 weeks and just recently moved to therapy. But, he is not making progress as fast as they would like, so not sure if he gets to stay there or not. :( My husband has been struggling with migraines that are getting worse and more frequent and recently had an MRI. He has a cluster of veins in his brain that might be the cause. Very scary and I don't yet know the full extent of the issue, but he will be seeing a neurologist soon. The potential for stroke is higher with this condition, so I am freaking out (inside) more than just a little... Please send some positive energy our way...

    Ashley is doing well and we made a trip for her to go see her boyfriend about 5 hours away. She was over the moon, but very sad when we had to go. He is coming back at Thanksgiving though and finishing out the semester online. He unfortunately is under quarantine right now as he was diagnosed with Covid. Adam is a little overwhelmed I think this semester and may have bitten off a bit too much with 19 hours and being a teachers assistant for a math class. He is also done at Thanksgiving. He is turning 21 this year and I'm trying to think of something special we can do to make it a good celebration. My 50th was last month. It was pretty low key, but I did get a lot of birthday wishes from friends which was nice.

    A 5 year get together sounds wonderful! Best wishes to you all!

  • vlh
    vlh Member Posts: 766

    Ajbclan, so good to "see" you! Good gravy on the fender bender stuff. That's the last thing a new driver needs.I didn't take driver's education. I learned from my parents & reading, but how to deal with an accident should certainly be part of the curriculum. I recall the panicked feeling I had several years ago when I came home to a vague message from my insurance company about an accident. I was freaked out worrying that I'd unknowingly cut someone off, but it ended up being a hit-and-run involving a van traded in many months ago. Title had transferred so I was very upset that they called me when I had zero liability. No more trips to the body shop for your vehicles for many, many years, please!

    I'm sorry to hear about your friend's diagnosis. I used a Japanese skin cream from Amazon that my RO recommended highly after seeing a male patient's skin do remarkably well despite intense treatment. The texture is nicer than Aquaphor, but I don't know if her RO would be receptive since it's not been formally studied.

    I don't blame you for dropping the Spanish class. The satisfaction survey just went out for ny first online class. There was definitely a learning curve so hope the students weren't unhappy with their experience. The hours in my non-ergonomic office are kicking my ample derriere...feel like I was hit by a truck today. I hope you get your "Under the Tuscan Sun" moment soon!

    (I'm going to respond one at a time since my pea brain doesn't retain much information.)

    Lyn


  • vlh
    vlh Member Posts: 766

    Kechla, I'm so very sorry to hear about your dad and husband. Scary, stressful stuff in the best of times, let alone with the storm and COVID-19. Positive vibes are headed your way. Please keep us posted as time allows.

    I'm sure that Ashley is eager to see her beau soon. I'm assuming his virus symptoms weren't severe? That's a lot for Adam. Even though one has to be a bit creative in our current environment, I hope you can think of a fun celebration for him.

    The B-I-G 50? Happy Belated Birthday!

    Lyn

  • vlh
    vlh Member Posts: 766

    Cali, everything going OK in the Golden State?

    Dara, it's been a few months since your spinal procedure. How are you feeling?

    Annie, I continue to think of you & Josie often. She must be getting so big!

    Lyn

  • darab
    darab Member Posts: 894

    Hi all... Kelly, the list that Kelly/Kechla put together is great. I was a mess after radiation, (the joys of being extremely fair and freckled!) I know my radiologist was very specific about any creams I used. I know I also had to stock up on super soft loose t-shirts to wear. Lots of clothing irritated the skin. I saw someone who took a soft men's t-shirt, cut it up the from and then put ribbon ties on it so she could wear it into the radiation area and not have to change into a "gown/shirt"

    Lyn, (or anyone) has there been word from Annie? I've now been in for umpteen spinal procedures but nothing is 100%. I have had ablations up and down the lumbar and the back is still painful if I do much of anything. The joys of Femara and my oncologist said I need to stick with the hormone blocker until I hit the 10 year mark. So I guess 6 more to go.

    Kelly, Belated Happy Birthday! I think my best birthday was my 50th. I'm not sure why, but I seemed to get a new sense of freedom and just let all the little things go.

    What are you all doing for Thanksgiving? My daughter invited us to Carlsbad, but I actually think my husband and I will be staying put. Her husband is a fire fighter though so I worry about my husband. It's so encouraging with the new possible vaccine so we think we'll wait a bit longer. I'm still going to her house to help my granddaughter, but my husband has a number of pre-existing conditions.

    Well, have a thankful Thanksgiving wherever you are! I know I love to vent to you all here, but we do have so much to be thankful for! Love to all of you, Dara


  • vlh
    vlh Member Posts: 766

    Howdy, Dara! Good to see you check in. I'm very sorry that the spinal treatments haven't helped. Back pain can be so debilitating. Even a simple task, like doing dishes, becomes an exercise in endurance. Would a different hormonal treatment be an option?

    No, sadly there's been no news from Annie since she shared long ago that she had a recurrence. I think about her and little Josie so often, wishing we could see a photo of them together excited about the upcoming holidays. It haunts me how unfair and evil cancer is, especially when it impacts someone so young.

    I understand the mixed feelings about Thanksgiving. My best friend of almost 30 years invited me to dinner, but fully expected me to decline because of the COVID risk. I adore her 100 year old mother so it's especially sad to not join them, but after so many months of isolation, I hate to take the chance during what is hopefully the last virus surge we'll see.

    Hugs to All,

    Lyn

  • ajbclan
    ajbclan Member Posts: 396

    Hi Everyone! Happy almost Turkey Day and Kelly/Kechla- happy belated birthday! I hope there's some news (positive please!) on your dad and your husband! Too much on your plate and you're definitely in that "sandwich generation" of dealing with aging parents and your own kids.

    Thanks everyone for your tips. There was a delay as they found cancer in a lymph node, but she got news yesterday no chemo (which we all know would be exciting lol). She's very private, so I don't know the full diagnosis in detail, and hoping I'll hear what her treatment plan will be now that she was clear of the chemo.

    Dara- I was wondering like Lyn if maybe you can take a breather on the blocker and try another one? I went from Anastrozole to Femera (all generic though) with about a month in between. I have noticed that my joint pain doesn't seem to kick in until I've been on it for a good 6 plus months. First was in the hands and then shifted on the 2nd med to the knees. I forget too (and just think I'm old) about the fatigue? Now with the time shift, I"m ready for PJs at 5!!!

    Not doing anything this week either. We shot down a camping trip as a "rogue" family was joining (lol- just a family we didn't know)- and we've done pretty well staying away from others why take the chance. We've had our flu shots, but my daughter had a rare immune disorder and doesn't get them any longer. Also will be talking about the upcoming covid vaccine with her neurologist. always something right?

    Hugs and kisses and still have to pinch myself that 4 years ago we were in the middle of crap!

  • caligirl55
    caligirl55 Member Posts: 407

    Hello Ladies, I am not sure how time got away and I haven't been checking in. Honestly ladies I am exhausted being back at work full time. I come home so tired mentally and physically. We have many changes with the health department regulations. Now we have students on campus. So good to see the students for sure.

    ajbclan... My scare is still numb but then my C-section scare is still numb too after 30 years so I know that's normal. Hope your friends recovery and plan is going well. I had radiation burns so bad my 6th week in and I had tried everything and started moisturizers before my treatment began... I thought I'd made it through with no problems till boom my skin split open I wish I had had some different creams.

    Kechla .... So sad for your dad and hubby that's got to be overwhelming. I'll add them to my long prayer list. Does you dad get to have any visitors?

    I hope we can all have a pleasant Christmas Season. California is shutting down again in some areas. My son Tony leaves for Germany Monday to join Claudia and the boys to live and get her medical care for her Thyroid cancer. It's sad what this pandemic has done for many families.

    Our nursing department is doing a decorate your door contest between the schools....we are going with the Baby its COVID outside ..... theme .... On our health office door โ„๏ธ๐ŸŽ„

    Love & hugs ~ Vicki ๐Ÿ˜˜



  • vlh
    vlh Member Posts: 766

    2021 has been, um, interesting so far, hasn't it?. ๐Ÿค”

    Caligirl / Vicki, How is Claudia doing with chemo? Are Tony and the girls feeling settled in?

    ajbclan, rogue family...HA! Sorry that the camping trip didn't work out though. Will your daughter get the COVID vaccine? I'm on a couple of wait lists, but no idea when a shot will become available.

    I had a "C" scare...sharp pains, fullness & tenderness. Nothing showed up on the bilateral mammogram or physical exam so no idea what was going on. Fortunately, the symptoms diminished.

    Best Wishes for a Happy, HEALTHY, Prosperous New Year, Lyn

  • caligirl55
    caligirl55 Member Posts: 407

    Happy New Year !! Not that it feels much different so far.

    Lyn ... That is interesting since I have had pain & swelling in the lymph noid area. Tomorrow afternoon I see my oncologist so we will see what he says. My daughter in law will have surgery on the 26th of the month to remove the rest of her thyroid and some of the lymph noids and then is so far only having radiation so we will see how her surgery goes. My son Tony & the boys are well. Tony is a little shut down and I think living in Germany isn't as exciting as he remembered but I think time will help him adjust. I pray

    Hope everyone is doing well.

    Hugs ๐Ÿ˜˜


  • vlh
    vlh Member Posts: 766

    Blast! My three paragraphs of text disappeared so will keep this short. Cali, what did the oncologist say about the swollen node? How is the Germany crew doing now? Did the DiL's thyroid surgery go OK?

    All, have you gotten your COVID vax (if you plan to do so)? I got my 1st shot about 2 weeks ago so hoping the 2nd dose will be available.

    Share a quick update when you get a moment, folks!

    Lyn

  • ajbclan
    ajbclan Member Posts: 396

    Man I am not doing my part in staying connected here! Cali- yes, check in and let us know how everyone is doing. Dara- hope all is well there...Kelly/Kechla?!! Anyone else please feel free to even just say hi!

    Xmas was fine for us. Covid and some rain limited our extended family time, but made for a much more relaxed Christmas lol. I think we enjoyed that.

    I had some weird pains I'm thinking with my implants. Now of course I feel like something looks off. No pain anymore...not sure if its the lymph system? I haven't been very good about doing the manual drainage. I see my MO in about 10 days so will see what she says.

    Ok weird side note- One of my neighbors has a grapefruit tree. There's 2 other ladies that started picking and juicing them right before covid I think and so I joined in. I now enjoy grapefruit juice but just read something about it affecting how your body processes estrogen? Another weird question for the MO lol.

    Lyn- I was hesitant last year about the vaccine, but heck- put all that crazy chemo in my body- what am I worried about lol. So once I'm up for it, I'll get it. I've been doing some research for my daughter- she should be ok with the Pfizer or Moderna and how those are made. I joined a facebook group and a lot of folks have been getting the vaccine and doing fine with it (Shea had Guillain-Barre Syndrome 13 years ago so we're cautious with vaccinations. Her's was sparked by some virus however). Speaking of my daughter- she turns 18 next weekend! Ugh!!

  • caligirl55
    caligirl55 Member Posts: 407

    Hi ladies ... Time sure gets away from us doesn't it?.

    Claudia had her thyroid & 33 lymph nodes removed. She had a bad reaction in the hospital when she wasn't producing calcium? In March she will have a radioactive iodine treatment and will be in the hospital for over a week she said till she stops glowing ๐Ÿ˜€ I hope my son is being helpful. Our Leo turns 5 this week and it will be the first birthday of his we will miss. Germany is hard to get to in the middle of my work week..lol My oncologist didn't seemed concerned about my concerns this visit. He feels the lymph node nerves are healing. Whatever!!

    Lyn.. I got my second dose for the Covid vaccine 2 weeks ago and I had no bad reactions.

    But as you said ajbclan after chemo what's a few aches and pains going to do to us ๐Ÿ’ช Let us know how your appointment goes. Happy Birthday to your girlie ๐ŸŽ‰

    Hope everyone is doing well...

    Hugs ๐Ÿ˜˜

  • vlh
    vlh Member Posts: 766

    Howdy, Ladies!!

    Caligirl, how is Claudia doing? It must be hard to have little Leo so far away.

    ajbclan, that 18th birthday milestone must produce mixed feelings for you as a parent. You're right...it is rather funny that we debated getting the COVID-19 vaccination after bombarding out bodies with poison for months! At least for triple negative cancer, we're using the same drugs that have been around since the 1980s while we obviously don't know yet about any long-term side effects from the vaccine. That uncertainty was my main qualm. I didn't have any major side effects with either shot although I slept most of an entire day & night after the 2nd shot.

    March 14th marks a year since I've seen anyone socially. I did take my best friend to get some medical tests, but I don't think that counts. ๐Ÿ™‚ With the variants rearing their ugly heads, indoor dining still worries me; however, spring weather means patio dining options should be available. I'm a hugger so am afraid that I'll forget the virus stuff & smoosh my friends when I finally see them.

    I hope everyone will check in when you get a chance

    Lyn

  • caligirl55
    caligirl55 Member Posts: 407

    Hello Ladies,

    I hope you all are well.

    Lyn... I can't believe this whole quarantine and masks has been going on for over a year. It's good to get out there and enjoy the world a bit more now.

    It's hard for me to relate since I have been back at work full time since mid August and we have had students on campus since October. I attend church weekly and I am a masked greeter. I never gave up my hugging but otherwise I'm cautious so I feel like my world is moving along like normal... Or whatever normal is now.

    Our Claudia had to wait till sometime later this month for her radiation therapy to begin since she still had milk in her breasts even though she hadn't breast fed Liam for months. I guess it can increase chances for future breast cancer so she had to dry them up before her treatment begins. I pray when it's all over the cancer is gone.

    Hugs


  • vlh
    vlh Member Posts: 766

    It's great that your work & social environment are somewhat normal, Cali. I went inside a restaurant for a meal for the first time in over a year. It felt quite strange!

    Having never had kids, I know nothing about breast milk, but didn't realize that it would linger long after nursing. Did they give Claudia a medication to hasten the drying process so she can proceed to her radiation treatment?

    I was almost in a panic. When I first logged in, there were a million article links and a Topics list, but I couldn't find our little group of chemo pals. I know we don't touch base often any more, but I like knowing that our scary shared experience created a bond across the miles. โค

    Lyn

  • caligirl55
    caligirl55 Member Posts: 407

    Hello ~ it's hard to think some people are in quarantine still when I've been back full time at work since August. Once you are out and about working all day you almost forget about all of the Covid stuff. Until you make tons of calls to every absent report for almost every illness since almost everything is a Covid symptom. Parents get annoyed for sure from all my calls ... But don't call in your child sick when your out of town for a cheer competition. Then sweetie has to quarantine or get tested.

    Hope everyone is well. I know Lyn I have had trouble logging in before to the site here and have had difficulty and I would hate to lose y'all. Hope you are doing good Lyn ๐Ÿ˜

    Hugs


  • kechla
    kechla Member Posts: 181

    Hi everyone. Sorry it's been so long between posts. It's been pretty hectic.

    Dad is back home after his stroke. I think most people hear this and think, "oh, he's better!" Yes, better than he was, but nowhere near the person he used to be. He is wheelchair bound and can not get from 1 surface to another without help. Getting out of the house is a production. Mentally, he is all over the place. Short term memory is not very good at all, but long term is great. We can talk about the past all day long, but he can't always remember that he called me 5 minutes ago. Some days are better than others. He has been better than he is now, so not sure why he is losing ground... Local doctor just says thats the way it is. :\ We have an appt at Mayo in May, so hopefully we will get more information and possibly a better medication and therapy plan then.

    Ashley is graduating HS and Adam is graduating college, so we've been busy with those preparations. Also getting senior pictures and getting ready for prom (we are having one!!!) Also, I coordinate the post prom party (11pm - 4am), so have been swamped trying to plan that at the last minute. We found out about 4 weeks ago that it was going to happen. Should be a good time, we have a magician, hypnotist, escape rooms, volleyball tournament, casino, etc... Can't wait. Of course, masks are required and lots of sanitation stations.

    We are all vaccinated now and finally took a trip (to Cabo). It was very relaxing! We didn't do any excursions (wasn't quite ready for that level of socialization), but had fun at the beach and the pool and 85 degree days.

    I had no trouble deciding to get vaccinated. I believe they are safer than the virus itself. I did a lot of reading on the science behind them and while the vaccines are new, the technology has been used in a lot of treatments already. I got the J&J one (no clots for me luckily).

    Another good friend of mine (my daughters boyfriends mom) was diagnosed with BC. She caught it relatively early. Another acquaintance (my sons 2nd grade teacher) also diagnosed late last year and is finishing up her treatment. Hers was not caught early and she has had a very rough treatment schedule. She is doing a "targeted" chemo which is very cool that it finally exists now for BC. I think I personally know about a dozen friends and acquaintances who have been diagnosed (all under 50, most under 40).

    Jim's headaches still persist, but they don't think it is from the tangle of vessels in his brain. Hoping they subside soon. He did go a couple years where they were less prevalent. Now he is having back trouble and it may be a bulging disc. Can't get an MRI until he does PT though, so that is the next step.

    I am relatively healthy, but still struggle with joint pain. It subsides quite a bit when I am on a low carb diet. I don't know why I can't just eat what I should to feel better. Why do I continue to eat things that make me feel bad? My willpower is in the toilet...

    I am still working from home and just got a new directive that the company is not planning to return until September now (instead of June). UGH! Although, they may start allowing some key positions to come back sooner. We'll see.

    The trees are finally budding and we have a few flowers. I hope you are all doing well and enjoying spring!


  • ajbclan
    ajbclan Member Posts: 396

    Hi Ladies! I've been meaning to post, and then I saw the latest come through my email! Cali- so many thoughts, from the long distance worry with Claudia....having so many nodes removed eeesh! I'm impressed how you've been back working fairly normal for so long! Lyn- glad you've gotten out and about- I know just a taste of "normal" feels good.

    Kelly/Kechla- I don't know how you juggle everything! No way I would add the task of Senior parties to my plate lol. Mine is suppose to graduate, but as she told me last night "I'm just trying to get through this year". So fingers crossed. They're adding some celebratory things now, but she doesn't seem overly interested. Today is the wrap up of filming their Spring Musical (Little Shop of Horrors). They're able to do much of it together with clear masks. We did a fund raiser with those pictures of people in the audience that you'd see on the sporting events, so they have someone to "perform too". From the pictures there are quite a few animals in the audience this year lol. Pretty funny.

    Migraines- my daughter has them basically daily, husband gets them weekly right now. One thing I've learned, and have to remind myself is this is a disease. So your husband has migraine disease, and certain triggers (or combo of triggers) aggravate and spike the pain. Adam has never done much besides take an abortive med that works fairly well for him. Shea has run through most things (neurologist said she's thrown the kitchen sink at it). She doesn't complain unless it's spiking higher than usual. My problem with her is she doesn't pay attention until its too high and the meds don't work for her. She's currently gluten free, on Emgality (newer CRGP blocker- there's several of these injections out there). I definitely know that stress and weather shift triggers both of them now (I'm the only one paying attention lol)...allergies as well.

    I'm so sorry about your father as well! My mom had a stroke when I was about to have Shea. She went through BC and colon cancer as well, and at the end anxiety/depression which all turned into dementia. Been down that road and it's one of the hardest things ever (harder than dealing with my stuff). Definitely difficult making life decisions for someone else.

    I am probably one of those ones that is still fairly isolated. I hit the stores, walk with friends, but haven't sat down at a restaurant since we took the little side trip to San Diego back in Oct. Part of it is laziness...rather just be home. My husband has been more cautious than all of us which in the long run a blessing. Shea has been at school hybrid and back this week "full time" which equates to 4 days (one online still). I'm vaccinated (Pfizer), Adam got J&J, and Shea just had her 1st Pfizer shot (did some research as she had Guillain Barre as a kid). BUT...Adam just went through a heart valve surgery a week ago today! He's 51. So in better shape than any of us, but turns out he had a congenital fused heart valve that has closed up over the years. As I think about Covid and all of the "folks with pre-existing conditions", little did we know that my pretty healthy husband, fell into that category. The man shattered both of his legs in a dirt bike accident 20 plus years ago, in pain daily, and I can't stay up with him walking. The only reason he knew something was wrong was he was suddenly out of breath mountain biking. He had to push back with the primary care dr when his blood work came back "fine". Treadmill test had to get him above 90% of heart rate to see anything happening. One month later he's having open heart surgery. So I'm on the couch right now while he watches some violent movie lol. But thankful of all the medical advancements! Ok I wrote too much! Love you all!!

  • darab
    darab Member Posts: 894

    Hi all... gosh I'm one of those flakes as well. I don't know where the time has gone! It's not like I have a ton to be able to do!! I'm hanging in there. Cancer seems a far away memory at this point. Can't believe we are coming up on year 5 anniversary! My rheumatologist wants to switch a medication to the biologic, Humira. You can't take it until you are at or past the 5 year mark. Still makes me a little frazzled though. My back, linked to osteoporosis, linked to low bone density, linked to Femara is still a mess. I have 8 bulging discs, severe stenosis, and severe scoliosis. It's like, haven't we all done enough for the medical community??? I think it's time to let someone else have a chance! lol (but not really!)

    My husband and I have been providing transportation to 2 of our local grandkids to jr. high and elementary school. Both my son and daughter-in-law teach etc. and the kids are too far to be able to walk. School has been so crazy these last 2 years, I can't imagine what people do who don't have family around! I'm also do acupuncture twice a week to try to mitigate back pain. I think it helps, but who really knows. I am in a pain management program but honestly, the best thing is to lay flat with the heating pad. Not very exciting though! I also try to go to my daughter's once a week for just a couple of hours to help her. My adopted grandson is back living at home but things are deteriorating pretty rapidly. They have certainly pulled out all the stops to try and help him but it's just a very hard situation, and super hard on the whole family.

    I'm still trying to do my pottery but not quite as active as before the pandemic.I've converted a spare bedroom into a studio and just love it. I love that I can go in and work for an hour or so and then stretch out. It's still is my sanity saver!

    Kelly, I'm so sorry about your dad. I don't know which is worse, to have the body have challenges or the mind. I've had both with members of my family and both take such a toll on those all around.

    (Other) Kelly, are your daughter's migraine's hereditary? I've had enough migraine's to know I couldn't imagine dealing with one every day. I guess sometimes we just surprise ourselves with what we can learn to live with when it comes to pain.

    Lyn, I totally agree that even though it's not as often as it used to be, I feel so connected to all of you, and love knowing that we're here to support each other as we move forward with our lives.

    Take care to all of you and know I'm sending hugs and good thoughts to you and your families.

    Hugs, Dara

  • vlh
    vlh Member Posts: 766

    I'm too tired to respond fully right now so just a quick note to say how pleased I was to see the life updates, even if some of the news is sad. My cancer-related dates are a bit different because of needing two lumpectomies & the seroma infection delaying the start of my chemo, but I'm pleased to note that Thursday (5/20) marked 5 years since my diagnosis. The 5 year mark is a biggie for us triple negative ladies, Cali, since (knock on wood, leather, my noggin) our risk of recurrence drops markedly.

    Hugs to My Chemo Buddies,

    Lyn

  • caligirl55
    caligirl55 Member Posts: 407

    Hello ladies ๐Ÿ˜ It's been too long for me to post. It's been a busy spring at work and I retired this year so lots of lunches & dinners to celebrate with friends, family & co-workers. If I knew it would be so nice I would of done this years ago lol if I could of.

    Kechla .. So sorry to hear about your dad and all he's going through and for all now that you have to deal with. Congrats to your Ashley & Adam. You are brave taking on the after grad event. But I remember doing all that and now I have 0 energy ๐Ÿ˜ณ I bet Cabo was fun. I could handle just relaxing at the beach. I have so many younger women in my life that have had to deal with BC. I try to help and be encouraging when I can. I agree why do we eat what we know will leave us with pain & & suffering plus weight gain for me ๐Ÿ˜ฌ

    Ajbclan .. Yikes with the migraines it seems like they could make your quality of life better with all the modern medical advances for migraine sufferers. So sorry ... Adam also having heart surgery it just shows you we never know what's going on inside of us. Hope his valve procedure is a complete success.

    Dara.. I can relate to the spin issues. When I was in the pain management doctors office I had all the diagnosis on the chart from herniated discs to spinal stenosis & arthritis. I have things that help me carry on with my day to day life. We have helped my daughter so much through this Covid stuff and I also wonder what people without family help do it?.

    Lyn.. This is my 5 year Dx month and we both need to do a little victory dance ๐Ÿ˜€ To celebrate it ๐Ÿ’— Who new TNBC had a good side.

    Stay cool and stay safe my breast cancer buddies ๐Ÿ’— Y'all have a special place in my heart ๐Ÿ’—

    Hugs ๐Ÿ’•

  • ajbclan
    ajbclan Member Posts: 396

    Hi Ladies! I guess it's ok that our posts are getting fewer, but thinking of you all today as I hit my 5-year mark. I'm so proud of the Triple N ladies as I know it's even more significant for you all. I do recall not being able to digest even reaching the 5-year mark and here we are.

    So I've got the osteopenia and the last check with the oncologist she's indicating I'll go off the Femera at the end of the year I believe. She considers the risks at this point greater- and it sounds like several of you are experiencing that with your backs, etc.

    I just got back from meeting with a cardiologist. All is ok, discussed my palpitations, etc but he said magnesium, hydration, and exercise. The exercise seems to be a running theme lol....but I have to say my knees have been significantly better since we got the stationary bike! Definitely worth the investment in whatever gets you moving, but this has worked for me so far- significantly less joint pain (I also take Move Free daily), my heart palpitations aren't as noticeable and I'm feeling better overall.

    My husband has recovered, but as you all know it gets frustrating when the Dr's see him basically for the first month and say ok we'll see you back in 6 mos. Um...he just had open-heart surgery?? Really? So he's switching cardiologists as well lol.

    My daughter is doing pretty well- but may add to my stress as no one really tells you that the worry not only doesn't go away it's almost worse as they get older?!! She's a great young lady, but they enjoy hanging out in the car and driving around and it's late at night and I'm trying my best not to worry but that's tough lol. She's finding her way- I've pulled back and I'm letting her navigate her health at this point with some occasional nudges.

    Ladies- congrats on this milestone! I raise a glass to all of you, and those we've lost along the way. I thank you all for helping me along this journey!

  • darab
    darab Member Posts: 894

    Hi all, yes I think it's a good sign that our posts are stretching out. Kelly, you're lucky you can go off the Femarra. I'm already into the osteoporosis stage thanks to Femarra but my tumor was high risk for recurrence so they recommend staying on it for 10 years. I now get shots of Prolia to try and boost bone density. I just saw a neurosurgeon yesterday at City of Hope and he said I definitely need a lumbar fusion. The pain is pretty constant but I just don't think I'm ready for the surgery and recovery. Just the thought of spine surgery terrifies me.

    Family is doing pretty good. Unfortunately, my little grandson with all the issues has had to move to a residential school and center in New Mexico. His issues just progressed to the point it wasn't safe for him or the family to stay in his home. He's 10 now but in a very specific center for his disorder, Reactive Attachment Disorder (RADS) and hopefully is getting the help and therapy he needs. I talk to him on the phone every weekend

    Yes, congratulations to all of us for making the 5 year mark. Did we ever think we'd reach this point when we first started chemo? I go this month for my mammo and ultrasound. I find I don't stress the way I used to when the date rolled around. I do wonder about those who started here but don't check in. I hope and pray they are doing well. Take care all of you, and Happy Labor Day! Love, Dara

  • vlh
    vlh Member Posts: 766

    Fond greetings to my chemo pals! I haven't fallen off the planet, but find that I've turned into a hermit, both in person and digitally. I still think of you often and wish we could all feel fabulous and have a 5 year survival celebration!

    Kechla, how is your dad doing? It's hard to see our parents decline. Is Ashley at college, working, taking a gap year? Did Adam find a good job? How are Jim's headaches? Are you back in office now? How goes the joint pain?

    Ajbclan, was your daughter able to graduate? Does Adam like his new cardiologist? Does he feel fully recovered from his surgery?

    Dara, did you end up having the lumbar fusion procedure. Is your grandson doing alright in New Mexico? It must be difficult to have him struggle. Are you spending time in your studio?

    Cali, are you loving retirement? How has your daughter-in-law fared with her cancer treatment? Does the family plan to stay in Germany?

    As for me, as noted, I've become a bit of a recluse. Between back pain & the weird incidents I've had since having the red devil," I can only stand or walk for about 5-7 minutes so it's far too easy to sack out on the sofa watching hours of TV. I need to rejoin the Y plus have an appointment for a possible spinal injection for my disc herniation. Hopefully, that will put some pep back in my step.

    I'm visiting my 88 year old mother this week in the Midwest & hate to be 1,300 miles away as winter approaches. She used to have an older manufactured home in an Over 55 Park, but could no longer afford it. Since she would no longer be in AZ, my much younger sister and BiL moved to Tennessee. She was having some skin and allergy issues and went from working an 11 hour day (remotely) to landing in the ER with life threatening sepsis. The scalp problem or a sinus infection may have triggered the sepsis, but the medical staff wasn't sure. She's home, but recovery from sepsis is both mentally & physically challenging. She is 8 years younger than me so not allowed to have scary health issues, :-}

    I hoped to get "promoted" to annual BC visits. My oncologist counts my 5 years from the date I finally finished chemo (March 2017) so one more semiannual appointment.

    Whew...longest post ever! I'll try to be better about checking in and look forward to hearing from everyone.

    Hugs, Lyn


  • kechla
    kechla Member Posts: 181

    Good afternoon all! I am finally an empty nester. I was not looking forward to this and miss my kids. But, I decided to fill my time with things I've wanted to do so have been busier than ever (the reason I haven't written in a while...) Work has been incredibly busy and pretty stressful lately. I need to take a step back and realize that nothing stays the same and even though things are different after our acquisition, it is still a good job. Jim and I took a pottery (wheel) class together. It was a lot of fun and I think I will keep at it (not sure if Jim will.) Dara, I have newfound respect for your pieces you've shared with us. I will not be sharing mine (yet)... They are quite pitiful. I have also taken on the task of painting my kitchen cabinets. This has been going on for about 4 weeks now. 1 coat of adhesion primer, 2 coats primer to prevent tannin bleed, 3 coats of paint, sanding, vacuuming, wiping between every layer. Lots of work! I am down to 10 doors that need painting only and then done (husband is in charge of putting them back up. We went with a dark grey to match our new countertops. I'll post pictures once they are back up. Right now the kitchen just looks like a mess. (I could never be a person with glass front cabinets.)

    The kids are doing well. Ashley is loving her freshman year and Adam is 1 semester away from graduating with his masters. Next semester is student teaching. Jim's headaches persist. Wish we could find a cause or a good treatment.

    My dad is making slow but steady improvement. He actually pulled himself up at the kitchen sink from his wheelchair a couple weeks ago unassisted. That was a very big deal! His emotions have calmed down significantly and with some changes to medication, the hallucinations have stopped. He's made more progress in the last 6 months than the first 6th months post stroke. Definitely not typical, but gives me hope that his progress will continue. It just makes my blood boil when I think of the recommendations given to us early on by medical professionals (do not resuscitate, put in a skilled facility, he will not make any more improvement, do not bring him home...) Last weekend, I went home, took him out to lunch at a great restaurant, over to my brothers to visit, then out to a sports bar to watch the bears game. He is not the person he used to be. Getting places is harder, he struggles with short term memory. But the conversations we've had in the past year have been incredible.

    Lynn, sorry to hear you are not able to get around much. My mom has hip issues that prevent her from walking very far before pain sets in. It is a frustrating cycle... I hope your midwest trip goes smoothly. The weather here has been beautiful lately (in Iowa). Sounds like quite an ordeal your sister has been through, I hope she is on the mend now.

    Dara, sorry to hear that your grandson had to move. I hope that they have found a good place and that it is therapeutic for him.

    Kelly, good for you to keep moving. I need to figure that out. I hope your husband is able to get a good second opinion. No doubt on the worrying about our kids. It never ends.

    Cali, I'm so jealous of you retiring. It's likely a ways off for me.

    We are heading on vacation soon (just Jim and I) to Estes Park in Colorado for my birthday. We have a VRBO booked there for a few days and then a hotel in Boulder for a couple days. Can't wait for some relaxation and hoping to see lots of wildlife.

    I am in the process currently of doing a gluten challenge (eating gluten on purpose) and will be getting a scope to test for celiac in November. I am taking full advantage of the challenge and eating things I haven't in years! LOL! My body is telling me that I shouldn't be, but hey if I have to, I may as well enjoy it right? I'm not inclined to think it is celiac, but it will be nice to rule it out. In the meantime, my joints are on fire.

    Wishing you all a happy fall!

    Kelly