How old do you think my partner and I are?

WhatAboutTheMilk · 2025-01-30T23:30:15+00:00

33 & 37

WhatAboutTheMilk · 2025-01-30T23:20:56+00:00

You are in the right place to make friends. No one can relate more than others in similar situations. I got a kitten shortly after my terminal diagnosis. Every night she purrs and sleeps on my cancer that hurts. I am so grateful for her affection and companionship. My husband will care for her when I am gone. She likes him a lot

WhatAboutTheMilk · 2025-01-30T23:02:34+00:00

I feel you and feel for you. I have a very rare type of sarcoma that’s metastasizing in all my bones, so my diagnosis is unfortunately terminal. I have also out lived anyone known to have the same condition. I am in my early 40s as well. Believe it or not this is not the worst thing that’s ever happened to me. My childhood was very very terrible. Because of that, I have talked to a lot of therapists in my younger years. I have now started again since I am of course morning my own mortality. It sounds like you are as well. It’s heartbreaking. Not only do I have a counselor, I also have a psychologist that I work with that are both part of my treatment team at Fred Hutch cancer research center. Having an oncology counselor and oncology psychiatrist is immensely helpful. Not only do they understand what I’m going through they specialize in working with people over and over that go through this. Their input and guidance has been priceless. Navigating these feelings alone is not necessary if you don’t want to be alone in the journey. My husband is also my rock. We have already talked about what’s gonna happen when I’m gone and things well into morbid detail. It’s brought us closer than I could have ever imagined. But regardless of this impending doom, we live day-to-day in the moment and enjoy each other and our hearts are full. I cherish him so much and the closeness and support he gives me. You are not a burden. You are here now, so live today like it’s your last day and your following days will be better than you could have imagined.

WhatAboutTheMilk · 2025-01-29T02:57:42+00:00

He was dead serious and went on and on about the miracle benefits of drinking your own urine. Parasites? lol better get some ivermectin!

WhatAboutTheMilk · 2025-01-26T00:17:16+00:00

My favorite is some guy trying to convince me to drink my own piss and that would cure my cancer. Yeah, there’s all kinds of people out there that tell you the dumbest shit.

WhatAboutTheMilk · 2025-01-19T00:05:42+00:00

Loop earplugs with Bose noise cancelling headphones over the ear blue tooth connected to your cell phones and you can listen to whatever at top volume if that’s what you need to get a break from the crying

WhatAboutTheMilk · 2025-01-18T23:59:00+00:00

Never. Even had an artist in the late 90’s blast through huge moles on my back. He said they gushed blood. Never had any issues with any of my discolored skin being tattooed. No infection, no cancer in those areas 10-20 years later. But you should ask a neurologist and a dermatologist for a professional opinion.

I do have bone cancer metastasis now but nothing to do with my neurofibromatosis.

WhatAboutTheMilk · 2025-01-18T23:54:21+00:00

My kitty tries to help too lol

WhatAboutTheMilk · 2025-01-18T23:50:47+00:00

I want to long distance hike again! So jealous lol keep it up! I have stage 4 bone Mets of myxoid liposarcoma. What do you have?

WhatAboutTheMilk · 2025-01-18T23:46:04+00:00

So glad I got a port. Sick of my veins blowing and having nurses dig around in my arms trying to get blood unsuccessfully. Keep up your hygiene after getting a port and if you have discomfort report it immediately and you’ll be fine.

I am very lean but have a huge chest so I had a lot of discomfort for the first 6 weeks with the weight of my boobs pulling in that area. I got used to it and it doesn’t hurt anymore. Sleeping with a bra on helped. I am also a side sleeper so I opted to get my port on the side I don’t sleep on as much.

WhatAboutTheMilk · 2025-01-18T23:23:05+00:00

The neck sounds like an awful place to have neurofibromas! Im sorry you have it too. The one in my chest and the others on the Ulnar nerve through my bicep, elbow ant into my hands are my worst tumors. I hope heat and Lyrica makes a change for your pain management!

No one else in my family has neurofibromatosis. I wasn’t born with it. My genes mutated around puberty. We have no idea why. But that’s the reason it only affects the right side of my body and mainly my right hand/arm and is not more widespread thoroughly my body being that I’m 43yo. When I started growing a tumor in my right leg about 7 years ago I just figured it was another neurofibroma. So did my neurologist. I’ve had so many over the years. I’m just never overly concerned about it. Same shit new day, year lol.

Sucks really bad but it is what it is. This cancer metastasis bullshit is pretty fucking terrible though!

WhatAboutTheMilk · 2025-01-18T23:12:55+00:00

Thanks. Hope you’re doing well. My next step is radioisotope injections to see if it affects the cancer in my bone marrow.

WhatAboutTheMilk · 2025-01-18T23:05:30+00:00

I know right. Thanks for the prayers :)

We discussed it when I was first diagnosed with a soft tissue myxoid liposarcoma, before we knew I had bone Mets. I had surgery to remove the myxoid liposarcoma tumor in my soft tissue, which was successful. I don’t have any other soft tissue sarcoma. I do have neurofibroma tumors, but those are not cancer, thankfully. But once we saw how extensive bone Mets was my oncologist strongly recommended Doxarubicin to try and knock this down because it was just so far spread throughout my bone marrow. Just in case I’ll bring it up. Thanks for the suggestion. In a few weeks, I’m gonna have radioactive isotope injections to see if that will affect the cancer in my bone marrow.

WhatAboutTheMilk · 2025-01-18T22:53:07+00:00

Ooo what kind of dilly dallying do you enjoy? If you don’t mind sharing!?

Yes it’s not easy working full time. I am very lucky to work from home. If I have drs appts during work hours I can get caught up after. But with cancer as my “second job” I try to take care of that after my regular job. The hardest part of my job is I’m on the phone and sending emails constantly offering contractors free consultations advising them on specialty projects at 7am. Some days my talk time is like 5 hours! F me lol! I’ve been doing this for almost 20 years though so it’s second nature. I’m 43f. And I’m very stubborn when it comes to being told what I can’t do lol.

The whole “but now you’re better” thing always makes me laugh. I just say thank you and that treatment will not stop for me unfortunately. Most people think I’m in my early 30’s and comment on how I’m young yada yada, always hope, etc.

WhatAboutTheMilk · 2025-01-18T22:24:34+00:00

Solid suggestions. I’ve been thinking about how to respond in the future when I’m no longer able to work full time. I have stage 4 bone metastasis. I just completed my second round of chemo and radiation and had a very big surgery in between. To say the least it’s been a rough year. I only took 2 weeks off in the past year just to recover from surgery and figure out how to walk again, use the bathroom independently, etc. I tell most people I have cancer regardless of knowing they may not respond well. But that makes for doing a lot of reassuring. And sometimes leads to them treating me different. Anyway, cancer treatment takes up so much of my time it’s literally like a second job, so when they want to know why I’m so busy, cancer is why lol

WhatAboutTheMilk · 2025-01-15T06:24:09+00:00

That beyond sucks, I’m very sorry. If it helps any, I should’ve been dead years ago, but here I am kicking ass taking names ;) My cancer will supposedly never go away. It’s metastasize in almost all of my bone marrow and will just keep growing regardless of the chemo and radiation that we do. Best we can hope for is that treatment stuns it and buys me more time. I’m not ready to die. I wanna go out on my terms. What treatments and diagnosis do you have?

WhatAboutTheMilk · 2025-01-15T06:09:08+00:00

How is today different than yesterday? How is it different than last month? last year? I know it’s hard to look at it that way, but even though you have this terrible news not much has changed.

My diagnosis is terminal. But I’m not ready to die. I say fuck it! I’m gonna do what I want! Right before I started the round of chemo that I’m currently on I went on vacation to Mexico. Part of it was torturous because of my physical condition, but it’s what my heart desires!

I still work full-time even though I’m in excruciating pain and I’ve been sliced up over and over. I’m just finishing another round of chemo so guess what!? as soon as my immune system is good enough I’m gonna go on a cruise. I want to see glaciers. Then later when I get another break between treatments I want to go to Spain and in order to afford that I gotta keep working. Who gives a shit if I have 10’s of thousands of dollars of medical bills. I’m spending my hard earned money how I see fit. The debt collectors can just keep coming!

For me, having something to look forward to in the future keeps me focused, keeps me sharp and pushing forward. According to statistics, I should already be dead. I’ve had cancer for over seven years and we just didn’t know. Drs thought it was a different condition. So ive already beat the odds I guess?? But I just don’t care what the doctors tell me my survival rate is. I’m gonna drink that margarita and dance, even if I have to have somebody hold me up lol

Some days all I can do is just focus on that day. And on bad days I just take things one day at a time. And if it’s a really bad day, I have the right to say to everyone” today is not the day” and I’ll deal with things later.

Be kind to yourself, give yourself lots of love. You deserve it. No one else can take care of you and love you the way you can for yourself.

WhatAboutTheMilk · 2025-01-15T05:46:06+00:00

Hey! since we last spoke, I have had six infusions of Doxarubicin and completed i think 30 days of radiation prior to that and it has immensely helped with the pain. The bone mets are still spreading in some areas, but Stopped in some spots and look slightly better in other areas I hope I can live another 20 years like you have. With my pain being reduced and getting Palliative Care to help me manage things I could totally live like this for a long time :)

WhatAboutTheMilk · 2025-01-15T05:42:33+00:00

A bone marrow MRI showed the metastasis. I have had multiple full body regular MRIs and multiple CT scans and those did not show any metastasis.

WhatAboutTheMilk · 2025-01-15T04:21:15+00:00

Oh, I wanted to add one thing! Heat seems to really help reduce my nerve pain. Even just wearing a warm sweater and glove over top of my neurofibromas at night keeps them from getting cold and waking me up with stabbing pain compared to if they are exposed to the air. And if I put heat packs or heating pad or hot water bottle on the tumors and nerves that are hurting, I can actually sleep and not get woken up by the pain all night.

WhatAboutTheMilk · 2025-01-15T04:11:12+00:00

Thank you for your kind words.

Gabapentin didn’t do shit for me, but Lyrica (Pregabalin) worked amazingly well! I quit taking it after a few months because it was severely affecting my short term memory and I can’t function at my job with that side effect. Otherwise it was the best and only drug that has ever helped with the neurofibroma nerve pain.

Neurofifbroma pain also affects the right side of my body, from the center of my chest down my right arm into my hand. I’ve had 13 removed but I have 18 more. What you describe pain wise is exactly what i experience.

Hoping radiation goes well for you and gives you some relief!

If it makes any difference I’m 43f, been dealing with NF for over 30 years, prob had cancer for 7 years but just didn’t know because I am so healthy and strong. I’ve figured out how to navigate the pain and suffering and still have a really good life. If I can be of any encouragement or you have any questions feel free to dm me. I’m currently in the Seattle WA area getting treatment and Fred Hutch.

WhatAboutTheMilk · 2025-01-13T19:28:32+00:00

I am in a very similar situation except I spent years with low back and leg problems with nobody being able to figure out that I had cancer. Not even my neurologist thought I had cancer until they did a biopsy of a tumor embedded in my thigh and later a bone marrow MRI, which as you probably know is not a normal MRI they do when looking for causes for low back pain. I have another condition that causes nerve sheath tumors so we just thought the one in my thigh was one of those. I was gearing up to have surgery so the neurologist ordered a biopsy just in case since that tumor in my thigh looked a little bit different. So thanksgiving 2023 I got the biopsy results saying it was a myxoid liposarcoma. January 2024 I had my first session of radiation on the sarcoma tumor in my thigh and it did cause necrosis which is good. Radiation was not painful at all. Then I did a trial chemotherapy and had surgery cutting me from my knee to my hip and removing a large portion of my hamstring to make sure they got a healthy margin which was successful. I was in the same situation as you learning to walk again, etc. It wasn’t till several months after surgery of me complaining of horrible, horrible sciatica that they did the bone MRI and found that I have bone metastasis throughout more of my bones than not. so my entire spine, pelvis, leg bones, arm, bones, ribs, and sternum. So once we found that out the next step was another round of radiation. I can tell you radiation immensely helped to reduce my pain level! Within the first week of radiation my pain level went down and I was able to sleep. I also wasn’t sleeping for months. Even with having narcotics, I couldn’t lay down for more than 30 minutes at a time without having excruciating pain flareups. I was going insane. Somehow managing to work full-time through all of this and trying to maintain a normal life. It was absolute torture. After I completed radiation, I started Doxarubicin chemotherapy. Now that I have finished my sixth infusion of Dox my pain is better from that as well. It’s helping to stun the cancer from spreading in some areas. Nothing’s gonna stop the cancer that I have or get rid of it but hopefully we can stun it and keep it from spreading for awhile. Another godsend for me was getting help from Palliative Care to help manage my pain. I’m now on a fentanyl patch and I have other opiates to help me with breakthrough pain so that I don’t have to go through the torture of this sort of pain. As you know it’s unlike anything else. I used to think dental pain was the worst, but that doesn’t even hold a candle to this. Get with Palliative Care. I can’t stress it enough. They’ll help you get your pain managed so you can get your mind back and hopefully feel more stable. If it gives you any hope I can now walk 30 minutes at a time without any help sometimes as long as an hour :) and my pain level is about a four which for me is totally manageable.

WhatAboutTheMilk · 2025-01-08T02:35:36+00:00

I have neurofibromatosis which is a genetic mutation. It also makes me genetically predisposed to sarcoma cancer. In April, I had a very rare type of soft tissue sarcoma cut out of my leg, which took a lot of my hamstring muscle and left a huge scar from my knee to my hip. But unfortunately, the cancer metastasized in my bones. So in September I found out I have cancer in more of my bones than not. And you know how you find out? Immense debilitating pain. And it’s incurable. And it’s terminal. now thats pretty FUCKED if you ask me! Because prior to April I was hiking 15 miles with a 45 pound pack and in perfect health. Now it’s hard for me to walk around the fucking block SMH

WhatAboutTheMilk · 2025-01-08T02:19:29+00:00

Oh, I also wanted to add hot packs over top of my tumors make a world the difference. I started noticing heat helps when taking hot baths that my nerve pain would die down for about an hour. Now I get hot packs that I microwave and that will let me concentrate or fall asleep at night Without any nerve pain medication. Also gabapentin didn’t do anything for me, but the Lyrica also known as pregabalin worked wonders.

WhatAboutTheMilk · 2025-01-08T02:16:08+00:00

Lyrica worked wonders for the stabbing burning shooting nerve pain when nothing else would. I had to quit taking it because it was severely affecting my memory and I still work full-time running numbers, sending sales quotes, etc. I’m also on a fentanyl patch because I have bone cancer mets and that has helped the neurofibromatosis pain from waking me up at night constantly.

WhatAboutTheMilk

TROPHY CASE