STEAM ROOM FOR ANGER

bcincolorado

Oh ctmb I know you miss him a lot. virtual hugs.

tinkerbell65

I haven't been around for a while. I want everyone to know I appreciate you.

The past year has SUCKED for me.

I feel like my body is failing me. I am still recovering from breast cancer surgery in august 2021, then radiation in October, medication side effects from exemestane. Before surgery, there was some abnormality on an EKG, then a cardiac ultrasound. I was cleared for the surgery, but told to follow up with "my cardiologist" after surgery. SO - I had to get a referral to a cardiologist - then a stress test, showing an enlarged right ventricle, which led to a cardiac MRI, confirming there was a problem, which would need surgery. An angiogram showed no blockages, the first bit of good news. I have no heart disease, my blood pressure is normal.

SO - I have an atrial septal defect, (along with some other words about anomalous pulmonary vein return) and I am schedule to have open heart surgery next week. this is something I was born with, which was never diagnosed, and I haven't really had symptoms. But then I think back to the number of times I've been to doctors with vague feelings of being short of breath.

This has hit me hard. I feel so much like a PATIENT now - my days off work have been taken up with cancer doctors, heart tests, cardio doctors, that I don't have time for much else. My life has already become smaller because of cancer, and being afraid to get Covid, now I am a heart patient and I wonder what the future will bring.

My energy is zapped - is it the cancer? the cancer meds? the underlying heart problem? Or just being 66 years old? OR maybe it's because I rarely get enough sleep.

I am sadder than I've ever been before, but I hide it well. Because I have to.

i just had to get some of this off my chest. Oh yeah, my CHEST! HA! my lumpectomy included a "reduction and lift" so I have incisions which still hurt, one scar which is thickened and ropey, and now I will have a big scar to complement the other scars. From my collarbone to my waist, one big battleground.

Thanks for taking time to read my rant.

denny10

tinkerbell, I am surprised you haven't used CAPITALS when recalling your horrid year. I am 66 too, I often compare my health status with friends to see whether it's age or cancer or meds , that is whittling away my physical abilities, many are developing their own health issues and are slowing down. I certainly don't function well without adequate sleep. Be proud that you are still working and if you feel angry or sad come back here and rant some more . I hope your surgery goes smoothly next week and you recover quickly.

Sunshine99

tinkerbell, that totally sucks! You've been through way too much!

(((hugs)))

Carol

AliceBastable

Aw, Tinkerbell, that's awful. When I had a pre-op chest CT before my lumpectomy four years ago, it showed both kidney cancer and an aortic aneurysm. I was MAD!!! I didn't want to know that! I had a nephrectomy to remove the kidney cancer, and I've seen a cardio-thoracic surgeon - so far it's watch and wait. I don't know if I'd have your courage to get mine repaired. I'll figure it out when it's big enough. I think you're smart to get it taken care of now so you can start healing.

If you need some good ripe swear words, I have a huge supply and you're welcome to some. Not all, though.

Rah2464

Tinkerbell that stinks!! What a rotten development. Hope the surgery goes well.

Alice I might need to borrow some of those ripe swear words ha

bcincolorado

Aww tinkerbell. It is awful to have to go through this as well but also glad they found it as well since it might be something they can fix and be done. You hear about people all the time born with heart stuff that goes undiagnosed and then just keel over all of a sudden and everyone is shocked. We are all here to support you.

KIDI919

Threetree, thank you for your good wishes. Covid is going around this area like crazy. Husband has it now. I am feeling better but u are right... I think its going to take quite awhile to feel back to normal.

Tinkerbell, Jeesh! Hoping all goes well with your surgery

SeeQ

Tinkerbell- What a terrible time you've been having! I can only pray that the heart surgery will resolve that issue, at least, and you will start to settle into a maintenance routine for the bc. Sending gentle cyberhugs your way.

nopink2019

exbrnxgrl - read your post on the alternative meds forum, but thought this was a more appropriate place for my post. Love your reference to being an outlier. You have so much experience and explain things so well. Congrats on your continued non-progression. I get a lot out of reading your posts. Keep talking to us.

exbrnxgrl

thank you nopink. As the years go by, I feel increasingly irrelevant here. Old school tx and, except for one life threatening complication, I’ve have an easy time compared to most. I even like my medical team, though my long time mo had the nerve to move back to her home country 😉. I did recently experience a terrible coverage snafu with Medicare blaming my providers and my providers blaming Medicare. It appears to be resolved but it hurts my head to think about it.

You know that I also feel helpless. My fondest wish is to figure out why I have done so well. Then I wouldn’t feel so helpless and irrelevant here. I should also say that I am struggling more emotionally now than I was at dx over 10 years ago. I just see a giant clock always ticking down. It looks just like the clock of the time dragon from the set of Wicked. I know many are thinking, Oh, shut up and be grateful, but on the spectrum of feelings experienced by mbc patients, I think my feelings and circumstances are as valid as any.

Harley07

exbrnxgrl - you most definitely are not irrelevant here. Please keep posting as your insight and experience are valued. I’m sorry to hear about your emotional struggles but do understand the reasoning behind it. (((Hugs))).

edwards750

My husband has BC/BS through his job. Thankfully I’m covered with that and Medicare as a secondary. When I was scheduled for 33 radiation treatments in 2011 we had already me our deductible months before. Thank God because we didn’t have $20-30k for those treatments.

People don’t understand or don’t care to understand that a BC DX includes treatment plans that can be very expensive but needed to save their lives. Ditto with meds.

Diane

Chicagoan

exbrnxgrl-I always enjoy your posts-even when we have different viewpoints, I enjoy learning yours so I hope you keep posting. I hear you about that Big Clock ticking. Last week I went to a Zoom writing retreat with other women in their sixties and early seventies. We would get a prompt and then write for 10 minutes or so, then another prompt. For some reason, the exercises took each of us to a very sobering place. I wasn't expecting this at all-but it was a couple of hours of having to look clearly at my mortality and changes that may be coming to my life as I age. I think I was the only one with cancer but all of us were taken to this fairly dark place. The leader this didn't happen with another group she led a few weeks ago with the same prompts. I'm still glad I went-I think there were things I needed to look at that I may have been avoiding. So I am wondering for you if it is the cancer or mortality in general? Probably the cancer-before I had this I assumed I would live to my mid-nineties based on my relatives. I've known quite a few people who have died recently so that also contributes to the feeling of doom. One friend was just 57. I appreciate you sharing your thoughts and feelings. Most of the time I forget I have cancer-but I think after breaking my leg I feel much less invincible and more aware of the fragility of life.

edwards750-BC certainly can be expensive. I feel fortunate b/c my insurance has a cap on out of pocket expenses each year.

Moderators

Cyberhugs, and appreciation for all!

tinkerbell65

Thanks for the support, everyone.

Denny10 - Yes, 66 seems to be the age where a lot of people begin to think of themselves as "old." Only a few years ago, I would say I felt younger than my age, and assumed I would live a long life, like many in my family. Now, I feel I am facing my mortality, and need to think about the things I want to do "before it's too late."

sunshine99 - thank you for the virtual hug. Funny how a stranger, reading words online and saying they care, makes a difference. But it does.

alicebastable - Wow, you have been through a LOT. I had considered waiting a little while to have the surgery, but once two doctors said this could cause heart failure, the anxiety and the hypervigilance are just too much to contend with.

rah2464 , bcincolorado, kidi919, seeq, and everyone else - thanks for the well wishes. for the last several weeks my main concern has been staying safe from COVID, as that could interfere with my surgery schedule.

I do OK most days, but at night, it hits me - they are going to open up my chest and fix my HEART - and I"m just so sad about it. I know this forum is for cancer, not heart problems, but when I look up atrial septal defect, I find a lot of support for parents of infants with the condition. so thanks again. It helps just to type this out, and know that people care.

AliceBastable

exbrnxgrl, I understand how you feel. My breast cancer was stage one, but so were the endometrial, skin, and kidney cancers. Do I count them as one big ol' giant stage one? Do I add them? Multiply them? Find their square root? Add in an aneurysm, and I don't know if I'm living under a huge thundercloud or if I'm the world's biggest hypochondriac.

bcincolorado

Just read online about someone 37 years who just died from this awful disease. So young and how sad. Hate cancer.

bcincolorado

Mad at big heavy snow that fell. Got about 8 inches out there. Did not stick where have to shovel but took out a big branch from the tree in the front yard and all over the front yard right now. Guess should be thankful did not fall on the house.Still snowing and can't even go move it out the way so DH can deal with it with a chain saw when he it is warm again at some point. It is almost summer right????

Also have 2 little grandkids which were to be 2 nights and now delayed because of snow so more stress and trying to entertain a 6 year old and 8 year old for 4 days it sounds like at least is harder. Love them but usually is it one night and they go home 2 max is hard. Now sounds like could be 4.

Spookiesmom

yes, I saw it was 90 Thursday and Friday ALL THAT SNOWI couldn’t deal with those swings. People laugh at me for freezing at 65 but at least it’s not snowing.

Sunshine99

bc, praying for you as you have your grandkids for longer than expected!

spookie, RIGHT? We're "freezing" when the temps plummet to 65! I get it!

bcincolorado

We did child labor trying to move the branches from the front walk and out of the yard. It may end up a week or so before it warms up again well before DH can go out there with a chain saw and cut in manageable pieces. Dug out some old snow boots I still had for the grands to use and had them carrying small branches to a pile behind his truck which parks outside since we only have a 1 car garage and the car goes in there. So it is all piled up behind the truck and out of yard now at least. They also shoveled the walk where the big snow fell off on the walk as well.

Woke up to more flurries though. Do not think anything is sticking but sure glad did not plant my flowers yet!!!

Watched more kid shows than I have since my own kids were little. Know they are going home today but still do not yet if they are being picked up or we are driving them 30 miniutes each way to go home. They have school tomorrow still.

Guess compared to being poked at and the tests and everything I can handle a few more hours.

Spookiesmom

When my grands were younger , neither me or the other gma could handle them together. DD would send us one each when they had a date night. And even then, the older one could be a handful. I admire you!!!

bcincolorado

We did survive. Watched way too many kid movies and yesterday afternoon they wanted to watch Elf even though it was not Christmas and wanted Grandma to make popcorn which I pop myself on the stove for the movie. I did which made them happy at least. Finally dropped them off at 5 last night and was too tired to even fix supper last night for us and went to bed to rest. Day of all the final clean up in the house and rest today before doc appt tomorrow morning.

AliceBastable

Wow, they redesign or whatever BCO calls their disaster has really driven people away! This was always such an active thread.

We went to an outdoor family event today. People were really spread out, which was good. We sat down by Hubby's brother and nephew-in-law. I mentioned to N-I-L that I saw they'd just been at a music festival in Chattanooga, and he talked about how much fun it was. I didn't see his wife, (Hubby's niece), so I asked if she was working (critical care nurse). He leaned in to me and said, "No, she got a nasty case of Covid, but she's starting to feel better!" DUDE! WHAT ARE YOU DOING HERE? GET THE HELL OUT OF MY FACE! STAY AWAY FROM YOUR FATHER-IN-LAW, WHO HAS PARKINSON'S AND OTHER HEALTH ISSUES!!!! AND CANCEL THAT OTHER FAMILY EVENT AT YOUR HOUSE NEXT WEEKEND!!!!

Of course, I'm conditioned to not say any of that out loud. It's really infuriating because these are otherwise sensible, fully vaxxed people. With the up-tick in cases lately, why are people going to packed public events? IDIOTS!!!

MicheleH57

I am absolutely for certain sure that I'm not alone here with my sadness, my worry, my boredom over a "Good gads, will this ever really be over?" situation.

BC diagnosed in early fall 2020, then surgery and radiation up to Jan 1, 2021. Moved to oncology checks every 3 months. With hand joint pain due to AI, consulted with a naturopath.

She has authority to order large scale blood panels in order to determine my overall health (other blood panels for cholesterol and such were totally fine).

BUT BOOM, the results of the blood tests from the naturopath have put me on what I call "Mr. Toad's Crazy Train." Actually, most everything was OK to very good, BUT neutropenia (low white blood cell count) was found.

Now, I do NOT recall getting a test for neutropenia or leukopenia AFTER radiation ended. But now I really think I should have. Yes? Maybe a few months out? Anyone else get a test after radiation??

And no one within the conventional MD treatment world has brought that up. Yet.

I also take buproprion which can kick off low white blood cell count. And no one has asked about, discussed that or any of my Rx's. Yet.

Due to the low blood cell count, the oncologist ordered an abdominal ultrasound.

And the results were fine for all organs, although an "echogenic focus of 0.8 cm" was found on the head of my pancreas. No other issues. Consulting radiologist wrote carefully on the report that it was *indeterminate* and maybe a CT rather than MRI "may be considered" for further evaluation.

Well, you know what's coming: an MRI of the pancreas. WTH?

And on Thursday, I have a bone marrow biopsy scheduled, at the order of the oncologist.

I am, as you can imagine, freaking out.

And oncology is NOT talking to me, not about why exactly or what they're looking for, although I can imagine and have used Dr. Google and talked to the naturopath

The naturopath has been a calming influence and she is not happy and is very concerned that oncology has gone into "panic mode," as she said.

I get wanting to check off all the boxes, but this is way out there and off the rails.

Everything the naturopath knows and can see indicates there is "no there there," and she's urged me to relax and just get through the tests. She doesn't expect anything really to be found.

I have NO symptoms of any kind related to low WBC count. No fever, no pain, no aches, no fatigue, no slow healing wounds. In fact, a few cuts and scratches I have had are healing well, like always. No pancreas issues, either.

Anyone else go through this "OMG! Now we're off to do ultrasounds and biopsies because we didn't do a test and now someone else did and ..."? Yes, I know: I've had cancer. But until and unless the *naturopath* had ordered the wide spectrum panel and the info came back - the oncologist didn't do it, my regular family practice doctor didn't order it - this info was not known.

I'm not happy. And I am very concerned. As well as sad, and worried and kinda bored with the waiting for what I hope is resolution - again! - of this round of issues so I can get back to trying to do things that have been on hold for 2.5 years!

Anyone else go through this?

AliceBastable

I'd ask your oncologist WHY on all the procedures! Some of them automatically go into overdrive instead of taking a breath first. Remember, your oncologist works for YOU.

bcincolorado

You do have a right to get a second opinion on everything but if they are concerned cancer is spreading somewhere I would ask for another MO second eyes on the situation. You might want to check with your insurance to make sure who you see is in covered in your plan as well. Best wishes to you.

Dancemom

Micheleh57, I personally decided to put my MO "in charge" ( I know she has a very good working relationship with my RO and SO). So far, anything I question, plan (dental, vaccines, routine stuff, travel to finally see elderly parents...) I pass by her and then my long time GP. All these treatments definitely affect WBC. Its all a balancing act . I am hoping for clearance to fly to old parents at the end of the month.

Alicebstable, I so wish people would get it. I'm in Manhattan where we have been at "high" level. Masks are "encouraged." All literature, if you choose to read, outlines the stats and reminds people that cdc gudlines recommend masking indoors and in crowded outdoor settings. If my umbrella hits you as amd your entourage breath by,, you need to be masked!!!! Its 18", not 3 feet, not 6feet. if you decide to get on the bus and/or subway i use to commute everyday, cover the pie-hole, and your snot maker, or go home. Locals mask.

Well, tourists did NOT get the memo. They just see the "recommended" part. One guy said to me "it says recommended, not required " and on public transportation, where it IS required by law!!!!!!

I will be killed by vacationers who think that because they are not in their town, it doesn't count.

ChemicalWorld

This is very minor in the scheme of things, but the "safe" hair/nail salon I was actually comfortable going to because they kept mandatory masking, basically gave less than a day's notice to announce that they were now "optional" but if you ask, they'll "accommodate" and put one on.....

I hate how this puts the onus on the vulnerable person. And it does seem pointless if the person at the next station is unmasked or there are a bunch of unmasked people walking around. I no longer feel comfortable at all there.

I was finally happy being able to cover up my taxotere-damaged nails that never grew back right Might have to go back to trimming my own hair.