My Husband, My Life, My Love, My Family, My Cancer

candy-678

I just want to say I HATE THIS DAMN CANCER !!!!!!!!!!!

I am not going into all the specifics right now, but my mind wants to do stuff, but my body cannot. I want to go out and give back to society. To be a productive member of society. I want to have passion for a project. I want to be busy with something.

I have the opportunity to do some volunteer work in my community. But not just Covid--- I am getting vaccine #2 tomorrow, but vaccine still not 100% protection--- but the fatigue, the icky feelings, the worry that I could catch something else but Covid with my low counts. I want to say Yes to this opportunity, but is it a good idea? Can I really invest the energy to it? Is it "safe" for me to do in my condition?

First, I want my old life back. But second I want to be able to enjoy this life as much as I can.

I JUST WANT TO THROW SOMETHING. THIS IS NOT FAIR.

moth

Hey guys! I had my mapping CT for the bone met today & my RO called to say that's all fine but the lung met he treated is showing that my lung is possibly developing pneumonitis. I saw my MO last week and she did a chest xray and thought possibly the same...but she was ok with waiting to see how it's going and having immunotherapy & chemo this week unless my symptoms got worse.

But the RO isn't happy and wants to start me on steroids & skip immunotherapy. My MO is away this week but whoever is covering for her agreed I wish my MO was here because I would have felt more comfortable with this decision. She's back next week....

Also, steroids. Ugh I hate steroids. I can't even remember what he said but it sounded like a big dose for a week and then a slow taper. I already warned my dh to keep me off online shopping - I crazy shop while high on steroids.

ShetlandPony

Moth, any chance of a quick email to your MO? Steroids. I saw a tee shirt that said, "I'm sorry for what I said on steroids". Maybe you need a "Sorry for what I bought on steroids."

moth

SP, no, I don't have her email and her phone would just go to her secretary and the cancer agency MO who is covering her pts this week I think she's really away .. and I do think doctors should get time off and I sort of think that this is something we can sort out when she returns. She might taper me off steroids faster and put me back on immunotherapy if I respond well. I hope.

lol about the t-shirt. I do get lots done on steroids. Maybe I'll put a huge dent in my knitting projects. And I have closets to clean out. Otoh, I swear my face has just barely returned to normal from the last dose I had in Nov, and that was a much smaller dose too... ugh

Micmel

Candy~ you’re not alone. Not even close. I have my first too. Happens when I’m triggered by a bad day.

Shetland... good to see you.

Bev Jen ~ sorry about your pain I hope the lower pain says sianara. And leaves you alone. It just bites at you. I understand. I feel pain daily. I try to ignore it. It doesn’t always work. I’m with you in thought. Sending good vibes.

Moth~ nice to see you back again. Sending you hugs for support.

Tanya_Djamila

Bliss my brothers are having mild symptoms so far thanks for asking.

Bev Jen sorry you’re having back pain like that. It certainly is scary and so dibillitating

Mae your feet look like someone placed flowers on them. Pretty and bright.

Mara I hope you got as much walking in as you wanted.

Moth sometimes the doctors just follow “normal” procedure. I hope the steroids aren’t too much

Mel I heard an actor Hugh grant I think say that he’s up nightly with crippling anxiety between 2-4 am. He was making a joke but ours is real and boy does it make for moody days

I hope everyone is doing as well as possible.

Tany

SeeQ

BevJen, sorry about the back pain. And how frustrating that your team is...unfazed...by it. I hope you get some relief soon.

Candy, hugs to you. It's so frustrating not being able to live the life of our choosing. Damn cancer!

moth - It's too bad your MO didn't mention what she would have done, if not the wait and see approach. It's a bummer skipping a treatment, but pneumonitis doesn't sound fun either.

Forgot to say, pretty flowers, Mae.

Rosie24

Moth, That is really frustrating that your treatment is being held off by others, not your MO. Maybe it’s the right thing, but not having her input leaves you with doubt about it. Hopefully when she’s back she can put your mind at rest.

Candy, Covid along with cancer sure messed up 2020, hopefully not all of 2021 too. I see your dilemma in wanting to do things again but still being worried about getting Covid. Maybe you can stick a toe in the water and try something you want to do but still wear a mask? Just an idea.

BevJen, sorry too, about your back pain. Have you seen it mentioned as a side effect of the immunotherapy at all? Hoping you get some relief or at least some acknowledgement soon.

Mel. I hope your family stresses have lessened some by now.

Hello to Everyone. Hope it’s a good or pretty good day for you all.

candy-678

Hello all.

I just want to explain further my post from yesterday.

I stopped working Dec 2019-- "retired" at the age of 49 due to the cancer. I was doing some volunteer things before Covid. My career was over, but I could still be productive in the volunteer sector. Not in the workforce anymore, I had time to give back by doing things with volunteer organizations. Then Covid hit. I have been isolated in my home since March 2020-- almost 1 year now. I still try to stay somewhat busy--- call church friends, do Zoom gaming with a group once a week, keep up with you all and how you are doing. I even continued a couple of volunteer things per Zoom meetings. But it is not the same.

Yesterday I had one of those volunteer thing meetings per Zoom. We were discussing the vaccine rollout and how after more of our group gets their vaccines we are going to try to get back to doing some activities in person. One thing mentioned was a project we could start which would include visiting people in our local hospital. Yes these volunteers are retirement age so they are "high risk" for Covid. But with summer coming, more getting vaccinated in the community, and maybe less issues with Covid they are willing to start going about their business again. I wanted so much to have a project, something to look forward to, put my energy in again. Something a few hours a week. But..... even without Covid lurking its head, there are other germs out there and I still have cancer and still on treatment that lowers my counts. Should I really be going into a hospital setting and possibly exposing myself to any number of germs. Sitting beside a sick person's hospital bed, touching the bedrails, etc.

I wanted so much to be a part of the group. It sounded interesting and it sounded like I could really help someone. But, do I want to put myself at risk. I am doing good with the cancer-- stable for now. I do not want to take chances with my health.

Yes, I am going to try to find some activities I can do safely. I want to get some sort of life back. But then I think of the fatigue, the nausea at times. Whatever I find to do I need to have flexibility to stop if I get tired. Something I can have flexibility with.

It just hit me yesterday. Cancer took my career, my health, my finances. Now, I cannot even have "retirement" like others. Cannot travel (finances). Cannot do volunteer committees. All I can do is sit in my house alone and take naps when I get to feeling tired and sick.

Thanks for understanding. I know you all understand where no one else can.

Moth- Sorry you are going thru this. I have not been on steroids before, but I heard they can be rough.

SeeQ- MO appt today?

Sunshine99

moth, I had the "Clean House Syndrome" when I took steroids during my first chemo. I took them the day before, of and after chemo. That was in the days before I had a housekeeper and I had SO much energy those days that I'd clean like a mad woman, go to the gym and work out, you name it. The crash came after that, as I recall.

This time, my RO prescribed steroids, but I didn't take them for very long. I had only 13 rad sessions.

Isn't it strange how such a tiny little pill can have such an effect on us?

phet7178

Hello all, long time no post

Moth - I'm sorry you have this stress of the pneumonitis. I've heard it's a very common immuno side effect, hopefully the steroids sort it out. Breathlessness is no fun and I find it doesn't help my anxiety either, though breathing exercises (perhaps paradoxically) do definitely help.

Mae- I love your tattoos! I also have always wanted a tattoo and now worry I'll never be able to get one because of chemo and things. I'm just getting adjusted to being immunosuppressed for the rest of my life, ugh.

BevJen - I'm sorry to hear about your back pain. I've had some lower back pain recently and panicked a bit but then realised I've been reclining in bed or on the sofa for weeks essentially recuperating from chemo which is not good for your back...any chance it's a 'mechanical' issue like this?

I've completed cycle two of gem/carbo which hit me pretty hard for the first 10 days. I assumed my hemoglobin would be low when I went in for the second gemzar infusion but actually it was high (?) and so was my ALT. I don't have liver mets, so we think it's the chemo (and the two courses of antobiotics I was on in the two weeks prior) - I hope so. I also had my CA15-3 checked on day 1 of cycle two (so after 1 cycle). It had doubled since the baseline count - 41 to 86. I know that's not outrageous by MBC standards but I am freaked out that it doubled (also TNBC, which I have, usually has lower CA-15-3 than ER+). I've been told by others that it can spike when you start a new treatment because the cells are dying and releasing whatever that antigen is into your blood. I bloody hope so! Speaking to my oncologist tomorrow and will pick her brains on that...

sending love and gentle hugs to all

illimae

Candy, I’m sorry. I was somewhat lost and very bored after medical retirement and without traveling, it’s ugh. I plan to shift my focus to more outdoor activities but I’m procrastinating.

Phet, I’m on oral chemo currently, so the tattoos were timed for my week off and after good labs. Feet sometimes swell after foot tattoos, so they’re up in the recliner for a few days.

My CT scans were scheduled for 3/9 but MO said my scans in December were good, so we’re postponing those until mid April when I have my next brain MRI. This works great because when I’m fully moved to the cabin, I only want to come back for a week and fit everything in at once.

More packing later, just relaxing now.

moth

hi everyone, thank you for the kind words. I'm feeling a teeny bit better about this steroid/immunotherapy decision.....though the thing that still gnaws at me is that I actually am not really symptomatic. My shortness of breath is so minor that I feel another person wouldn't have even mentioned it. It's just that I'm hyper vigilant to symptoms... my SpO2 is fine and I'm still able to exercise. But it definitely is showing on xray and CT so there's that

And the stupid guidelines go from Grade 0 = radiographic evidence only, no symptoms, to Grade 1 = symptoms interfereing with ADL (activities of daily life). And I'm like GUYS I'm maybe 0.25 on that scale! And at Grade 0 they just say "consider steroids" & "consider delaying immunotherapy" ... and so I'm like can we consider NOT doing that LOL

waaa waaa waaa. I'm just full out whining now. I've got the pills and I'm starting now. One whole week on 50mg /day and after that a twenty day taper!!! OMG. Though the RO did say that when my MO comes back she could decide to taper faster. I hope so. A whole month on steroids is not my idea of fun.

BevJen the back pain sounds horrid. I did hurt my lower back last summer when camping & it took ages to heal. Had to see massage therapist & physio. It was all out of alignment & seizing up. I hope you can find some relief. I wish there were physio & registered massage therapists assigned to cancer clinics because I think we need them to keep our bodies running as well as possible, kwim? And then if they can't fix things, they can help rule out simple musculoskeletal stuff and refer us up the chain for investigation... that would be my ideal system (if I ran the world lol)

mara51506

I am having a terrible mental health day, started last night and continued from when I got up. I can't stop crying. I am hoping the walk to the cancer clinic for my infusion will perk me up, I did a walk on the treadmill but that has not helped. I am having terrible thoughts about the weight gain and thinking I am just a pig, I have portion control in my diet so am employing solutions but really beating myself up. Not helpful. Not needing any pick me ups other than to say to myself, stop crying, start solving, obviously, if I am gaining weight, need to move more often than I do, have gone down to an hour walk and obviously that is not enough. Dropping some items when I have beans like shredded cheese etc, mostly beans spinach and a few teaspoons of queso which is not bad. I really don't want to be weepy at the cancer clinic because I will be told to take antidepressants. Not interested at this point. Maybe later.

BevJen and everyone suffering paiin, I am thinking of you, trying to solve my wicked hand and wrist pain myself that keeps me up so the back definitely sounds terrible.

SeeQ

Candy - Of all places, I agree a hospital ward may not be the best place for you to volunteer. I hope "the right opportunity" comes along for you soon. There got to be one - it just needs to hurry up! And, yes, MO appt today. I'm fully expecting good things, but still holding my breath, IYKWIM.

moth - I second your motion for therapeutic massage being added as a standard of care!

candy-678

Mara- Hugs from here. I understand the "terrible mental health days".

SeeQ- The retired folk in my volunteer group are concerned about the Covid, rightfully so. But, after we lick Covid, the health issues older retired folks have-- high blood pressure, high cholesterol, arthritis, etc, does not make them immunocompromised. So going into the hospital ward is something they can do post Covid. I wonder if I should though, with the cancer. I am hoping the "right opportunity" comes along for me. Something safer. Pocket duty with peanut M&M's.

BevJen

Thanks, ladies, for your support on the back issues. Last night I slept in my recliner, and it was so much easier on my back -- woke up this morning just a little stiff. Then I took a shower with hot water and my back seized up. Dammit.

As I said before, this, too, shall pass.

Hi to everyone!

SeeQ

Karenfiz..I forgot to say earlier, I had never heard of reiki, but I think mindfulness, meditation, relaxation are important tools for us. Your state of mind affects how your body works. It would be nice to see that incorporated, or at least offered, as a regular part of our care. We surely have the stress.

Ok. I've just got to say, the predictive text on my tablet is killing me. It comes up with the most off-the-wall words. If you ever see one that just makes you scratch your head, you'll know I forgot to go back and pre-read my post before submitting. Lolol

mara51506

I walked to the cancer clinic. Very sloppy snow and ice. Just getting my Herceptin. The sun is nice, feet got a bit sore on the snow from sliding a bit. Hoping the trip home is better. Sun is still out which is nice.

Edited to add that the trip home was easier since I stayed to the side of the road on the less busy streets, main sidewalks were just puddles so no sliding. Boots are still waterproof. App't was good as I did not have to wait long and the nurses were fun. Not sure if I will walk after supper, if I do, will stick to the side of the road. I will see how my feet feel. Mental health is a little better too, no weeping at the cancer clinic.

Micmel

I hate those weepy days. God knows I've had them. Shit... I have weepy minutes that turn to hours. Cancer is just plain hard to deal with. Wicked wicked disease. And I know we all hate it very much.

SeeQ

Update from my MO appt. I was expecting good news, and was not disappointed. Scans were good.

Will see the MO every other month. Still checking monthly blood work. Rescan in six mos., instead of three, barring other indicators.

mara51506

Mel, I feel you. I am going to bed earlier tonight and will make an effort to move more tomorrow as well. Supposed to be sunny but cold which is fine with me. I was OK this evening but know I fell asleep after I got home. Did a little laundry and am just getting my gear ready for bed, listen to some relaxing subliminal messages mixed in with rain as well as fan noise. Very peaceful to listen to.

Anonymous

Mel & Mara - yeah, I hear you. Some days the wheels depart from the mental bus and the engine blows up and you are left a smoking emotional heap by the side of the road. I had one of those the other day. I don't even know why Im crying either other than the total suckitude of it all adds up into one big realization I guess. Also, when Im fatigued or frustrated it usually happens. Even knowing it happens and just accepting it doesn't seem to work either!

Mara - I love ocean sounds and usually tell partner I need to chill out with ocean for a bit, but I also love fan sounds and have a white noise machine / actual fan on at all times.

SeeQ - what a wonderful report! Does this put you at NED? Nice that you can go to 6 monthly scans so early!

Rosie24

SeeQ, wow, congrats on the good scan and also moving to the 6 month scan schedule! Really good news!

Mara, Mel, Sondra, others with bad days, Sending a hug. I don’t think there’s anything to do other than let it be and let it out . We have your backs here so share with us if it helps.

Karen, I would love to learn or experience reiki, mindfulness, meditation. We have a center for cancer support in Cleveland called the Gathering Place (two locations even) that offers programs like those and things like art therapy and family support. They also offer free wigs, which I took them up on when I thought I’d be starting with chemo, then returned the wigs. I wish I lived closer but the nearest one is about an hour away and I haven’t taken advantage of their offerings other than the wigs. I think zoom is the main format now so you have me thinking I should just try what I can. Thanks for bringing up the benefits.

Micmel

SeeQ~ atta girl. Way to get them good results. I'm thrilled for you !!!!! I scan next week March 4. I feel physically fine. It's the fatigue and mental anguish that beats me up. Or when one of my kids will do or say something that makes me scared I won't see them have children. Especially my son. He's too immature to even think about that. He's not even wanting a girlfriend, they cost to much money he says. LOL. Can't say he's wrong. The drama has slowed some. It’s my son that needs to grow up ..the drama will come around again until he moves out. Ups and downs

SeeQ

SondraF, yes, from a flipping huge tumor, plus numerous others, to NED in 7 months of treatment. I about fell over. I've been walking around on a cloud all day. Evidently, cloud walking is hard work, because I'm wiped out. Took my car for an oil change this morning; I think it's nap time.

Hugs to Mara and Mel and others having a tough time these last couple days.

Micmel

gotta say Runor knew he wouldn't keep his room up. She said it after it happened last time. So she must have experience with this sort of thing. I'm at a loss really. It's a basic function. Dude clean your room, do laundry. Duh!!!!!! Maddening.

Micmel

Mae ~How are the foot tattoos feeling. ? Hope they are healing welll.

Waving hello back to SeeQ congrats again.
BooBoo~ sending a hug

Thank you Rosie for the hug. I needed one!

SeeQ

Mel, I think we all have the same problems with our grown up kids. I told my kids I was going to frame this and put it in the guest bath (AFTER they came back home. I never did, BUT I SHOULD HAVE!)

Unstated expectations are predetermined disappointments.

Our expectations:

No-brainers
This is not a hotel.
Treat us and our property with respect.
No drugs. Period.
Do not drink and drive. (Common sense, our vehicle/insurance).

Keep yourself on track and motivated
School; apply yourself; keep at it.
They're *your* goals; *you* need to make them happen.

Be pleasant and reasonably social
Don't be a hermit (not a hotel).
Clean up after yourself. (Duh!)

Maintain our guest bathroom - neat and clean.
Maintain your bedroom - respect my property.
Maintain yourself.

---

Oh, and I quit doing their laundry when we moved into this house (9th &12th grade). They didn't appreciate it at the time, but they both thanked me later. They could cook (basics), clean, and do their own laundry when they left the house. Most of the other 'kids' couldn't, and it didn't take them long to get frustrated over that.

Tanya_Djamila

Mara that was a real crappy doctor appt. I always have had to fight the battle of the bulge and ballooned in pandemic time to 196!!! My friend encouraged me to do intermittent fasting and it easy nothing special to eat. I just eat in a time frame of 8 hours during the day. I can drink water and or black coffee outside of that time. I chose the hours between 11-7. My husband started after I lost my first 10 lbs. he has lost over 30 lbs and so have I. Nothing to buy or special foods just being very disciplined about the time. My weight to date is 163 and I feel comfortable at 155 so that’s where I’ll modify. Sending hugs and encouragement.

Great wonderful fantastic dancing in the ceiling news seeQ!

In for pocket duty Mel on the 4th.

SondraF I need permission to steal suckitude

Tanya