Here is the update I promised on us... (which also turned into a little bit of me unloading some of my stress) (I may DD at some point, just because it is DH's personal business, and I don't feel like it is necessarily my place to leave it hanging out on the internet forever)
I feel like I re-tell the same information over and over again to a million people (family, friends, co-workers, etc.) and I forget what I share where, so please forgive me if I leave out details or repeat them.
DH had surgery on Wednesday last week, and was released from the hospital on Friday. Overall, the surgery went as well as one can hope brain surgery to go.
In some ways, he is recovering MUCH better than last time, and in other ways it is harder than last time.
During surgery, the surgeon said he touched the motor strip, which shouldn't cause permanent damage, but has made DH's left side pretty weak. He can't write his name or move two of his fingers (as examples). But I have seen improvement just in the past week.
About 75% of the time, DH's personality is pretty darn close to how it was before. The other 25% of the time he is pretty zombie-like. He will sit there and stare in space, and admit that he has no idea what is going on. I could be having a conversation with him, and he will just get up and walk away - completely clueless that we were in the middle of something.
You know how when your husband comes up behind you and touches your back or something, you know exactly who it is because the touch is so familiar? When DH is in 'zombie mode' (for lack of a better phrase) his touch feels just like it is a stranger. It is so weird. And when I look into his eyes, I don't see 'him' - just blank space. But then 5 minutes later, he can be right back to being pretty close to himself (as much as one can be a week after brain surgery)
His short-term memory is shot too. I am hoping the zombie-like personality episodes will improve with time, but am not as optimistic on the short-term memory issues. Which worries me. If he forgets that he is holding a spoon and walks around the house with it in his hand for 30 minutes, how can we ever get to the point where I can leave DD (or god-willing DS some day) with him and not worry he will forget that he is on kid-duty?
The surgeon said he was very aggressive in how much brain he took. Basically, he said he took out the tumor, and as much brain around the new tumor site and the old tumor site as he possibly could, because he "doesn't want to have to go back in 6 months from now". During our post-op conversation, the part that really threw me was the neuro explaining the steps from here on out, and including the phrase, "and from here, he begins the fight for his life". It was hard to hear those words.
We meet with the neuro-oncologist again on Friday, and then begin DH's radiation with a consult on January 4th. It sounds like the very tentative plan is to begin radiation on January 7th. I will be 34 weeks.
We got the first part of the pathology information that the new tumor is the same type of tumor as last time (no big surprise there), but the grade wasn't yet available when I asked last Friday. It should be back by now, but I decided that I am ok not knowing for a couple days, and am too scared to call and ask. We'll find out on Friday.
Selfishly, I am terrified how I am going to juggle all of this. If the grade has increased at all (which the oncologist seems to think is extremely likely given how quickly it recurred) they will do chemo in addition to the radiation. At the same time.
I can't imagine how physically taxing and exhausting the combo of radiation and chemo will be. I know that DH will be in rough shape and will need lots of taking care of. I just worry that either being 9 months pregnant or recently post-partum, I won't be capable of doing as good of a job as I need to. I am so scared to juggle everything.
I just want to get to March and have a healthy baby and a healthy husband.
Post by jennistarr1 on Dec 19, 2012 23:57:42 GMT -5
Hugs from me too and I'm glad you're able to share about this... I can tell you from the work I do that you can see improvement years down the line with brain injuries, so I hope that you'll see big improvements in the beginning but just know there is a long window for improvement. The cancer treatment I'm sure will be difficult as you've described but I'll send a ton of prayers your way!
I have amazing family and friends. A bunch of people are helping me out right now, and I have lots more waiting in the wings, begging to be given a task.
I haven't made dinner since the surgery - co-workers deliver something every night, plus they stocked my freezer full of home-made frozen dinners.
I hired a cleaning lady too. Hard time of year to coordinate her starting, but I can't wait for her help!
And I am keeping DD in childcare full-time starting in January. I had already turned-in her December schedule as a part-time schedule, so I have friends filling in the holes for now.
Thank you ladies for being an awesome support system right here! I have a hard time venting or giving too much info to people IRL, because it is really my husband's business to share - not mine. It is nice to have the internet to turn to where I don't feel as badly sharing details.
Thanks for the update. I'm glad to hear the surgery went well and that he's making strides toward recovery already. It sounds really scary but hopeful.
Is there anyone who can help you out? Family, friends, a hired nurse or other medical/paid help? Does your insurance cover anything? I don't know much about this stuff, but I hate to think that you'd have to take care of both your sick DH, your DD, and a new baby (plus yourself!) all at the same time. That sounds like too much and someone is going to have to step in to do something to help. I hope finding help is not difficult for you, I wish I had better suggestions on how to get there.
I do know that people have varying degrees of reaction to chemo. My mom had cancer a few years ago and while I don't think it was easy for her, she managed to work throughout the whole thing. Many people, that would be out of the question, but I'm keeping my hopes up for you that your DH has a "best case" scenario here and is able to at least take care of himself much of the time, even if he isn't able to help much with the kids.
ETA: typed too slow, glad to hear you have a lot of support. I hope you are able to lean on them during this difficult period!
We are definitely blessed in the 'help' department. At least for the things that I am able to let go of.
Some people (ie - my mom) are a bit over-bearing though, to the point I want to tell her to leave me the hell alone, lol. The night after surgery, I had arranged for my brother to spend the night at my house. That way I could stay at the hospital as late as I needed to, could come home and crash, and get right back up and go to the hospital in the am. Bro could take care of DD and what not.
I got home that night after midnight - so I had been up well over 20 hours, was stressed out, exhausted and hungry. All I wanted to do was eat some toast and crash in bed. My MOM (who lives out of state and was not asked to come over) met me at my door wanting to know why I hadn't asked her to spend the night instead of my brother.
I have my list of things going that I will never do to my kids or their spouses.
She is doing ok. The first day that DH was home from the hospital was rough, but she is getting better. It is a hard balancing act - he wants to be dad, but isn't always capable of parenting appropriately right now. I hate having to over-step what he says/tells her to do, but sometimes it is necessary.
She isn't too worried about dad. All that she knows is that he got another owie in his head, so the Dr.'s had to work on fixing it. We will cross more bridges as we come to them.
Baby she is pretty matter of fact about. She is excited for "if he is healthy enough to come home" and "if he lives".
Overall, she is doing pretty darn awesome for everything that life has thrown at her
You amaze me with your strength through all of this. I wish there was some way that we could help and I trust you'd let us know if there was. The 4 of you are in my thoughts and I hope the next 3 months breeze by and everyone is healthy comes March.
Oh Becca, I teared up reading that. I'm glad that it seemed to go well overall, but sad for the zombie-like states and forgetfulness. I hope those resolve themselves sooner or later. I just can't imagine everything you have been through and will be headed through over the next year. I am wishing you and your family all the best, and I'm so glad that you have such a great support system to help out.
I am amazed by your strength. Your children and husband are really lucky to have you. I hope you know that.
Post by UnderProtest on Dec 20, 2012 1:09:20 GMT -5
Hugs. You guys are going through a tough time and I admire how strong you are. Please vent here as much as you need. I wish we could do more for your family.
Thanks so much for posting. I was worried about you. I guess at this point we just need to wait and see what the best plan will be for him. I am wishing all the best to both you and your H. This will be a tough road ahead, but try to maintain hope and positive thoughts.
I wish there was something I could do to help (if there is, please just say the word).
Many hugs to you and your family. Wishing, praying, and hoping for the best.
You amaze me with your strength through all of this. I wish there was some way that we could help and I trust you'd let us know if there was. The 4 of you are in my thoughts and I hope the next 3 months breeze by and everyone is healthy comes March.
Ditto. You are an incredibly strong woman. I'll continue to keep all of you in my thoughts and prayers.