Topic: My Husband, My Life, My Love, My Family, My Cancer

Feb 23, 2021 02:09PM - edited Feb 23, 2021 02:10PM by 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."

Feb 23, 2021 05:58PM Micmel wrote:

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.

Feb 23, 2021 09:37PM SeeQ wrote:

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.

Feb 24, 2021 08:41AM candy-678 wrote:

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?

Feb 24, 2021 09:12AM phet7178 wrote:

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

Feb 24, 2021 09:42AM - edited Feb 24, 2021 09:43AM by 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)

Feb 24, 2021 10:10AM SeeQ wrote:

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! :)

Feb 24, 2021 10:33AM BevJen wrote:

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!

Feb 24, 2021 12:04PM - edited Feb 24, 2021 01:19PM by 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.

Feb 24, 2021 07:44PM - edited Feb 24, 2021 11:48PM by 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.

Feb 25, 2021 12:11AM SondraF wrote:

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!

Feb 25, 2021 06:20AM - edited Feb 25, 2021 06:23AM by 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

Feb 25, 2021 12:30PM - edited Feb 25, 2021 12:31PM by 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.

Feb 25, 2021 12:58PM SeeQ wrote:

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.

Feb 25, 2021 02:25PM illimae wrote:

Great news Seeq, congrats 🎉

Micmel, doing well here. I take the sterile wrap off tomorrow and continue with my nightly foot lotion routine. They’re so pretty, I might never wear shoes again, lol.

Had a zoom follow up about my thyroid today. Tiny nodules are unchanged since discovered 4 years ago and assumed to be benign, no need to annual US, just labs and yearly follow up. Works for me.

I’m up 10lbs from the holidays and birthdays. I start tracking food and walking more on Monday to stay near my current weight or less. DH keeps complaining about his weight, do gently trying to get him on board too.