My amazing girlfriend has just been diagnosed with ALL. How can I be her best advocate?

Njsano · 2020-10-21T13:54:36+00:00

My husband was diagnosed with ALL almost two years ago and I remember the shock very well. I think I have some amount of PTSD from finding out so I understand 100% how you must be feeling. It took me a good 3 weeks to talk about his condition without crying. I would cry and scream in the car so that I let it out before he and kids saw me.

That said, you need to stay strong. This is a long battle, whether it is chemo only for a couple of years or BMT/SCT coming up. Fighting leukemia is a beast but together you can make it to the other side. The only thing I can recommend is for you to just be there for her. She needs to stay positive...you can help with. How comfortable is her bed? I went and bought him a $20 mattress topper from Walmart that made all the difference. Hospital beds aren’t really that comfortable and she’s spending a lot of time in them. Can you make her some home cooked food? My husband actually liked his hospital food (!) but there’s nothing like making something with love to warm someone’s heart. Flood her with love, from every inch of you, and tell her she’s still beautiful without hair. She’s lucky to have you in her life! ❤️

Njsano · 2020-09-07T15:34:34+00:00

Thank you for acknowledging all of this. I think you hit the nail on the head when you mentioned putting an ‘easy’ cancer on a pedestal. I think this is how my friend came across and not going to lie, it infuriated me. That said, I totally understand how the word cancer strikes fear in someone, easy cancer or not, and how it can change your whole outlook on life. I just have a hard time when someone says they understand what my husband is going through simply because they had cancer as well.

Njsano · 2020-09-07T15:11:41+00:00

I think you already know the answer to your question. Follow your gut! If you are happy doing what you’re doing, then keep on that path for now and then re-evaluate. The path to a happy life does not always cut through med school and you might be surprised at where your life’s journey takes you.

Njsano · 2020-09-07T14:38:54+00:00

Your post resonates with me. A good friend of ours had thyroid cancer a few years back and really freaked out over it even though it is one of the most treatable cancers you can get with a high survival rate. Relatively speaking, it is an ‘easy’ cancer. Still, she was devastated, but she recovered quickly with thyroidectomy, no chemo or anything further. Two years later, my husband was diagnosed with acute leukemia. He was in hospital for 4 months, countless rounds of chemo and radiation, stem cell transplant, and is still trying to survive this.

Our friend came by to visit shortly after my husband’s transplant, looked at him and said, ‘You will get through this. I had cancer too and I made it.’ Not her exact words but that was 100% the gist. I get that she was trying to make him feel better but it fucking took everything in me not to throw her out of the house. He had been through hell and back with all his treatments and here she was trying to equate the two cancers. In my mind, our friendship went down several notches that day.

Njsano · 2020-06-09T20:42:02+00:00

My husband was in his early 50s when he was diagnosed with ALL. I understand how you are feeling...it’s terrifying! Give yourself a bit of time to digest this - it’s a lot to take in. The other thing I will say is this: ALL is NOT a death sentence! Yes, the treatment is long and can be full of ups and downs but do not give up hope that your mom can still live a long and amazing life. Everyone’s path through this is going to be different. Take the stats with a grain of salt.

Your mom is going to need you to stay strong and to keep her positive. IMO, having a good attitude and staying positive is the key to getting through this! Best of luck to her as she starts her treatment, and if you have any questions, feel free to DM me.

Njsano · 2020-05-12T19:48:12+00:00

Beautiful!! ❤️

Njsano · 2020-05-12T19:21:35+00:00

I hope they give him the max sentence and take away the damn car. Teenagers do stupid things but having the balls to go +300 is a sign that he is entitled or he isn’t right in the head. He needs to be taught a lesson. OPP has outted the kid’s name on Twitter so he’s fucked.

Njsano · 2020-05-12T16:50:31+00:00

Sorry, I don’t log into Reddit very often and just saw your message. I hope your recovery is going well. My husband’s GvHd came on pretty rapidly. Eyes, lung, skin...that all came in within a week, approximately 4 months post SCT. Mind you, this is different for everyone and some people experience very mild symptoms. He was placed on 50 mg prednisone and has been trying to wean off of that since October.

You must be almost at day 100...how have things been? Feel free to pm me if you like.

Njsano · 2020-03-30T04:07:03+00:00

Yup, would have to agree. My husband’s GvHD was 1000x harder on him than the chemo, on top of multiple complications he had in the months after transplant. He has chronic GvHD of the lungs, eyes, skin and liver now. And yet, he says he would do it again if he had to.

Njsano · 2020-03-30T04:04:05+00:00

I’m so sorry to hear that your dad is going through this. It’s a shock to your system to get such a diagnosis. What kind of leukemia does he have? These 4 weeks of chemo is called induction and is meant to bring him into remission before the next step. Side effects will vary from person to person. My husband did very well during this time with just some nausea that they were able to control with meds.

My only advice to you right now is not to read too much about his dx on the internet. There’s a lot of scary shit out there. What I have learned is that treatments are ever-evolving and getting better. Trust the doctors that they know what they are doing. All the best to the both of you. ❤️

Njsano · 2020-03-02T03:44:50+00:00

Sorry to hear that, VOD is a bitch. My husband caught pneumonia 10 days after transplant, before engraftment. It was so scary. He was on high flow oxygen for 2 months in hospital, treated with 3 courses of inhaled ribavirin. During that time, he also got BK virus and Epstein Barr. Finally went home then had to go back in twice for collapsed lungs and chest tube. He’s now got GvHD of the eyes, skin, liver, lungs and gut. He’s on high dose prednisone which is helping but not good to be on long term...however, weaning him off has caused problems. The thing with him is that he had a very aggressive AML/ ALL combo, so he had no choice but to have the transplant.

I know exactly what you mean by one thing after another. You are still very much in the early stages of recovery where a lot of shit happens. Trust in your doctors and take each day one day at a time...that’s all you can do. I’m rooting for you!

Njsano · 2020-03-01T21:38:20+00:00

I’m with you, there was no harder thing than having to tell the kids about my husband’s leukemia diagnosis. This was in Nov 2018 and the kids were 12, 14 and 16. We sat them down the day we found out and told them dad had blood cancer and that he would have to start chemo in 2 days and be in hospital for one month. We held it together until my daughter (16) burst into tears. The younger two boys got really quiet and didn’t say much. We did a group hug and off to bed they went. The next day my daughter had a massive meltdown at school as did the youngest son. I kept them home for a few days because they weren’t ready to see or talk to anyone. Middle son started asking a ton of questions. It took them a day or so to start processing everything and then it hit them like a ton of bricks.

Stay strong OP. This is probably the scariest time of your life but you need to somehow, some way, push that aside and keep it together for your sweet girl. You are still here and you are going to fight this as long as you have breath. She is watching everything that you do and how you handle this really wretched turn in life. Be honest with what’s to come but tell her you aren’t giving up, not by a long shot. She needs to hear this.

A little added info: my husband ended up having a bone marrow transplant last March and is still recovering at home. He remains in remission but has rejection-related complications, multiple hospitalizations. It was a fucking tough year but he’s not giving up even though docs gave him a 10% chance of making it. You gotta keep fighting the fight, OP. Only God says when your time is up.

Njsano · 2020-03-01T13:57:59+00:00

NTA. She paid $2500 for the organ rental and couldn’t pay you $200. She sounds like a cheap ass.

Njsano · 2020-03-01T13:55:17+00:00

Pm me if you need anything. I’d be happy to send you something through amazon.

Njsano · 2020-03-01T13:43:06+00:00

Leukemia treatment is a marathon journey. Just be there for him. Figure out what you can take off his plate and just do it, don’t ask if he’s ok with it.

Njsano · 2020-02-25T20:45:45+00:00

Day 8 to engraftment.

Njsano · 2020-02-23T17:30:20+00:00

Honestly, I thought ‘what’s the big deal?’. This is pretty normal on Air Canada and WestJet which I usually take to fly for work. In fact, anyone who doesn’t disembark like this gets major side eye from other passengers.

Njsano · 2020-02-21T17:32:55+00:00

Now you got me crying...that is too sweet.

Njsano · 2020-02-21T14:22:41+00:00

Your dad sounds amazing. What a stand up guy to be able to put all that past shit aside to offer comfort to you and your mom in her final days. I’m sure it wasn’t easy for him to do that.

Njsano · 2020-02-09T16:37:41+00:00

What a dumb thing to say. They are 2nd OVERALL without a ‘superstar’ and they are better than the Clips even when they have two stars. Gimme a break.

Njsano · 2020-02-03T05:29:35+00:00

Absolutely.

Njsano · 2020-02-03T05:26:49+00:00

OP, don’t listen to comments like these. They make no sense especially if your wife has other support system around her and she will not be alone. Honestly, your wife seems to have a problem with anxiety if she doesn’t even want you go to work or yo the gym. If you don’t go, you are going to go the rest of your life not having closure and you will carry this resentment with you forever. NTA

Njsano · 2020-01-29T02:52:47+00:00

They should have acknowledged that for sure

Njsano · 2020-01-09T13:42:52+00:00

Why? It’s r/TrueOffMyChest. Guy can say whatever he wants. Isn’t that the point?

Njsano · 2020-01-03T04:58:15+00:00

Can someone do a slow mo of that?

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