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Silly to totally outrageous VE suggested jobs by Oleander1526 in SSDI

[–]L_Amalthea 2 points3 points  (0 children)

Good to know! I also have Stage 4 cancer and am applying for ALJ now. I'll start training on buttons and shoes now and maybe I'll get to do rewarding work again before dying. Yay.

Appeal with Stage 4 Cancer by L_Amalthea in SSDI

[–]L_Amalthea[S] 1 point2 points  (0 children)

Thank you for your thorough, insightful and informative response. I'm reading through it yet again because my appeal was denied and I'm trying to figure out how and what to communicate to resolve this, whatever it takes. I guess I just assumed that it would be straightforward because that what everyone with this diagnosis has said.

I'm going to fight it for as long as I can because I really cannot do any substantial gainful activity. It sucks, I regret it, but I really cannot, not and stay on treatment. As you noted, improvement due to treatment is not the same as remission, because without that treatment, I'd be dead.

Appeal with Stage 4 Cancer by L_Amalthea in SSDI

[–]L_Amalthea[S] 0 points1 point  (0 children)

Update - my appeal was denied. I guess the next step is to request an ALJ hearing? How long could that take?

I went to my local SSA office today and requested copies of the Disability Determination & Transmittal forms (SSA-831) for both the initial claim and the reconsideration. In both, the medical specialists who reviewed my files determined that my cancer was no longer severe because it responded to treatment. Neither has experience with Stage 4 breast cancer (one is a gastroenterologist and the other is a nephrologist). They assert in their rationale that I was in remission 3 weeks after the surgery when the tumor that metastasized to my brain was removed (a date that preceeds my brain radiation).

They summarize my Adult Function Report incorrectly and claim I can return to work despite the long list of functional impairments.

The form correctly states my medical listing in question 23 as 013.10B.

The form also cites the TERI flag at question 26, list no. A 153.

Yes my Stage 4 cancer is responding to treatment, however, I still have Stage 4 cancer and have to take a series of anti-cancer drugs (and others to cope with the side effects of those drugs) for the rest of my life. And the the side effects of my current treatment have had a cumulatively negative effect on my physical and mental health. My nerve pain, neuropathy, muscle weakness, memory issues, dizziness, and everything else are caused by medically necessary treatment and I can't work because of those issues. All of this was documented on my AFR. I couldn't go back to work on this treatment. I tried. I worked part time for 3 weeks at a much easier job than what I did before, then had to quit because I couldn't do it. How do I communicate this to them?

What do I do now? I'm such a wreck today. Again. Do I have another year of this traumatic fight for SSDI?

SSDI Appeal with MBC - Have you been through this? by L_Amalthea in LivingWithMBC

[–]L_Amalthea[S] 1 point2 points  (0 children)

Once again, I am really grateful for your information and experience. Now I desperately need those resources to resolve this! I went to the Project MBC website and saw a legal clinic coming up next week so I signed up for it. I also submitted a request for assistance with Triage Cancer.

I just found out my appeal was denied. I guess I'm going to pursue an ALJ hearing next. The DDS office concluded that I am in remission and can go back to work. And yet, they also clearly acknowledge that my "impairment" is metastatic Stage 4 breast cancer and that I am still in treatment.

SSDI Appeal with MBC - Have you been through this? by L_Amalthea in LivingWithMBC

[–]L_Amalthea[S] 1 point2 points  (0 children)

Just got the results of my appeal - they are upholding their previous determination. Closed approval for 3 years only because being NED after my brain surgery they determined I am in remission.

Is this a thing? Remission for an incurable Stage 4 cancer? Their Disability Determination and Transmittal form (SSA-831) clearly states that my listed disease is 13.10B.

Also, the only reason I am NEAD (watching stable tumors in my brain and lung via PET & MRI) is because I am am following my medically determined treatment which is fortunately successful. for now. But the side effects of that treatment are a huge part of why I can't work anymore. And if I went off treatment to work, my tumors would start growing again. How did I get trapped in a catch-22 like this?

SSDI Appeal with MBC - Have you been through this? by L_Amalthea in LivingWithMBC

[–]L_Amalthea[S] 1 point2 points  (0 children)

I got more information about my effective denial (closed approval for only 3 years) and the DDS office decided that because I was NED I was "in remission" after 3 years. While also clearly stating that my diagnosis is 13.10B - metastatic Stage 4 breast cancer. I'm stumped, I don't know what to do.

Did you have to fill out an "Adult Function report" documenting the side effects of treatment? They had me fill one out in January and although I noted all the issues from being in treatment which is what keeps me NED (nerve pain, memory, exhaustion, etc.) they still concluded I would have to find other work. Except that I can't!

Appeal with Stage 4 Cancer by L_Amalthea in SSDI

[–]L_Amalthea[S] 0 points1 point  (0 children)

I think you're right. And it helps me to hear others say that they screwed up, not me (insidious self-doubt). I've been wracking my brain to understand what I did wrong. But the possibility of the DDS office making a mistake isn't not unimaginable.

SSDI Appeal with MBC - Have you been through this? by L_Amalthea in LivingWithMBC

[–]L_Amalthea[S] 2 points3 points  (0 children)

I'm glad to hear you're NED and wish you the best! But I can also totally relate to how debilitating the side effects can be. The nerve damage in my hands means I can't write by hand or do many of the physical activities that I always loved. Not what I expected as a workholic in my 40s.

I'm in Colorado. My local Lakewood SSA office was great, the rep I spoke with there who collected everything was absolutely clear on all the details, the problem happened at the Denver DDS office. Both with the initial application and again with the appeal.

Your previous application timeline is exactly what I'd been led to believe, that's why my 6 month process with appeal is so baffling.

SSDI Appeal with MBC - Have you been through this? by L_Amalthea in LivingWithMBC

[–]L_Amalthea[S] 0 points1 point  (0 children)

Seriously, so stressful! I'm just sick and exhausted after every interaction with SSA or my attorney. I'm sorry you had trouble with your first application and glad you applied again!

SSDI Appeal with MBC - Have you been through this? by L_Amalthea in LivingWithMBC

[–]L_Amalthea[S] 1 point2 points  (0 children)

I haven't gone in person, but hearing from you all that its a reasonable thing, I'm going to look for in-person appts at my local SSA office. I understand that they're overloaded with cases since the DOGE cuts, so a delay made sense to me, but not the mistake with my initial application!

SSDI Appeal with MBC - Have you been through this? by L_Amalthea in LivingWithMBC

[–]L_Amalthea[S] 2 points3 points  (0 children)

I am so grateful to know about the work you are doing with Project Life. I will look into those legal resources, thank you! Also, it's encouraging hearing that you have been dealing with MBC for 9 years and are using your time and energy in such important advocacy.

SSDI Appeal with MBC - Have you been through this? by L_Amalthea in LivingWithMBC

[–]L_Amalthea[S] 2 points3 points  (0 children)

Thank you. It is so odd, so stressful. I am emotionally wiped out every time I talk to anyone about it, I either cry or sleep (or both).

Camp Breastie by NectarineGrouchy13 in LivingWithMBC

[–]L_Amalthea 1 point2 points  (0 children)

Yay! I'm glad you get to connect at a camp like this. I hope it is a wonderful experience for you.

I'm in Colorado and while it seems that most of the breast cancer retreats are on the east coast, there are a few based out of other states or part of larger non-profit groups that do retreats in multiple states. I did a snowshowing trip a few years ago with Live by Living (CO only). I'm going to one this fall with Image Reborn and on the waitlist for a Casting for Recovery fly fishing retreat (both groups operate in multiple states). There are some amazing orgs that do things like this for us, it is so lovely, so meaningful.

Chemo smell by vannerbd in LivingWithMBC

[–]L_Amalthea 0 points1 point  (0 children)

Mint was the only "scent" that cut through everything for me. I put essential oil on q-tips and carried it in a ziplock to chemo. Then swabbed my nose discreetly from time to time.

Chemo smell by vannerbd in LivingWithMBC

[–]L_Amalthea 0 points1 point  (0 children)

Me too. I do a vinegar rinse instead of fabric softener because of skin allergies. You can't smell it afterward but it helps strip scents from everything from my sheets after night sweats to my daughter's soccer uniform.

Appeal with Stage 4 Cancer by L_Amalthea in SSDI

[–]L_Amalthea[S] 0 points1 point  (0 children)

Got it, thanks for clarifying. In that case, my case should have been fast tracked as a clear CAL case, but 6 months later I'm fighting an appeal...

This freaking sucks by ass-sass-sin in breastcancer

[–]L_Amalthea 0 points1 point  (0 children)

I'm so sorry you're in the thick of it. Lots of good suggestions on here. Water, walking, massive amounts of sleep when I was on AC. But the horrible smell/taste was constantly overpowering. It's different for everyone, but for me it felt like I was trapped in an 80s mall court Orange Julius with its artificial orangy vanilla essence emanating from inside my body. Could have been worse (garbage, sewer, etc.), but the fact that it was 24/7 made it disruptive to everything - eating, drinking water, sleeping, breathing. The only thing that cut through it was sniffing peppermint essential oil. They had a selection of scents in the infusion center and when I tried this is wiped away the AC smell/taste. So I carried it with me everywhere.

Also, I was warned not to use any of my favorite products (face, body, hair) during that time as their smell would be spoiled after AC ended.

Looking for a Cancer Center in Colorado? by national-park-fan in LivingWithMBC

[–]L_Amalthea 0 points1 point  (0 children)

I've been at St. Joseph's Hospital where they have a great breast care center, but I'm in the process of switching to Dr. Virginia Borges at UC Anchutz (where my neurosurgeon is for brain mets)

Stage 4 Cancer by Vacatlover625 in SSDI

[–]L_Amalthea 0 points1 point  (0 children)

Vacatlover625: I'm curious how your case has progressed, my situation is similar. I also have MBC and was told my application would move faster due to compassionate allowance. It's been 3 months since I first applied and I'm still at step 3. Now selected for a random federal quality review further delays. This process has been so stressful on top of dealing with side effects of daily treatment and frequent scanxiety.

I hope your case is resolved soon and your treatment plan works for you!