Howdy from Texas! --> My Momma ...

[Guest]

Hi there!

Well, I'm new here; will give a short intro. I hope I understand that that's how things are done here. If not, please forgive me.

We found out in early February that my mom has small cell cancer. Four (known) spots:

lung, brain, back of outer part of stomach, and neck.

She's had her first round of chemo then 21 days until next 'session.' (I may be using the wrong words here but I hope you understand).

They released her from the hospital after about a week but then after about 3 -5 days of radiation, she came down with pneumonia so she's back in the hospital now with that. They had her on 5 different antibiotics to kick it but it's working (or worked).

She's been doing "targeted" radiation on her brain since then. Should be done with it as of today or yesterday.

She had a rough weekend in there - her pulse or bp wouldn't come down despite the meds so they had her in "Medical ICU" but she's back down on the cardiac unit now. Either the lung cancer or the chemo or something has caused some sort of heart issues so that's why she was in there. I guess that's normal.

Is back in regular room now; ready to be discharged today last I heard as of this a.m.

The chemo has seemed to help. Her neck & back/stomach spots have all but disappeared (or may be fully gone; I'm not sure). They're doing radiation on her brain tumor but I do think they're done now (if I understand correctly).

And I believe that's working because she's regaining movement in her legs and according to the dr. the spot in her brain likely caused that leg immobility that came on.

She seems to be hanging on to a positive attitude and that's critical. My whole family believes in God and for us, that matters a lot and is helpful.

It's very strange & scary how "quickly" all this appeared to come on. She could walk on Monday; couldn't on Tuesday. Of course, God only knows HOW long it was working in her body "behind-the-scenes" and we had no clue.

I talked with her social worker & her primary dr. from the hospital and she'll need to go in a skilled nursing facility after release to rebuild her strength. I don't like it but I think it's the right decision. It's logical. She was in the hospital for 1 wk; came home a couple days. Then back to the ER & then the hospital due to pneumonia for 1wk+ now. So when they release her she'll need to regain her strength and they'll push her more and have the ability & training to help her rebuild her system much better than if she came home.

We had been thinking (& WANTING ... ) that she'd come straight home & we'd provide care.

Problem with that is it's just my dad (a stroke patient with his own serious health issues) and my sister (a kindergarten teacher) there at the house. Well, they couldn't do it the first time out... it put my dad in the hospital for a few days (literally) so... THAT'S not gonna work. I believe, at least for now, the Skilled Nursing Facility is the answer & that's just about arranged.

She's on a weekly shot of Procrit though so that's holding up the works. Apparently (due to cost) a lot of these places don't want to cover the cost of that drug.

From a practical POV, I can't do much. I live 45-60m from them. I have Fibromyalgia and Chronic Fatigue Syndrome & frankly, getting through each day is enough a rather huge challenge for me. Which is, of course, is all very frustrating. I want to be there for them and to help them and to just ... see them.

If it hasn't been crystal clear in this post yet, I'll just say it: I am a control freak from waaay back. 45 yrs. old. "Came down with" CFS at 27 & then the FM (I suspect) was triggered by the CFS and neither has ever let go of me. It's taught me a LOT of very humbling lessons & I'm NOT as bad as I was about being a control freak... I have learned to back off.. at least a little... and to pace myself... at least a little. It's still a daily struggle. For someone who's stuck on their b*tt most of the day, well, that's it's own form of living h*ll.

So... control freak supreme here. I wanna take and make this all better. And the truth? The truth is that I can't. No matter what I want. I haven't even hardly been able to see her and that's been just a real hard pill for ME to swallow.

And worst of all maybe? I'm scared to death. Trying not to be... but truth? I am. You know... I don't want to lose my mommy.

Her scalp is apparently really red and maybe scaly or some such. Guess that's not so odd for radiation. Lotions aren't really working well. Guess that's par for the course but I'm trying to find other things she can try.

Her energy levels are amazingly low. She can only take visitors for 5 to 10 minutes (family or friends) & then she's just drained. This is something I've tried to explain to my family for years (mine is from CFS) & they've seen it in me a few times... but it's just amazing to SEE it happen in my mother. Just floors me. And back to the ... scares me.

The rest of my family is doing okay overall I guess but lots of little "freakies" here & there. For example, my sister hung up on me on 2 separate occasions 3 times each. And reamed me out about calling her at work. This is VERY odd behavior for her and NOT her norms.

My dad is stressed, scared to death, overwhelmed & I think I maybe made him angry... he normally talks to me for loooong conversations & right now it feels like he's all but avoiding me. AUGH. More weird behavior. Haven't found a good time to approach him on it so I've left it alone thus far. He's very worried about momma for sure.

Odds are good I'm being weird too & just haven't recognized it yet. Guess THAT'S normal in these circumstances too. Just trying to hold it together in extraordinarily stressful times. Mostly I just wanna be right by my mom's side (even if no talking; don't care about that... just want to BE with her)... but haven't been able to.

And meanwhile, she hasn't really wanted to see visitors much because it's so exhausting and she feels compelled to talk to them. Scary.

Do you hear it? Fear, fear, fear. AUGH. And this is with me seriously trying VERY hard to let go of the fear.

So, there ya go. And here I am and I look forward to getting to know ya'll! I guess this got long & for that I apologize. Having a harder than normal time thinking clearly lately.

Gentle hugs.

Lori

[SandraL]

Hi Lori. I am so sorry to hear about your mom but glad you found this site. It sounds like she has had good care and that going to the nursing facility next is the right thing to do. Yes, this is so scary for all involved. Please keep us posted on how you, your mom and your family are doing. And let us know if you have any questions or are just having an off day and need support. Take care

Sandra

[LovesLife]

Lori - welcome to the place no one wants to have to be.

I am so sorry to hear about your mom and all the other things that are at play in your life right now. As a bona-fide control freak myself, I totally get what you are talking about. It sounds as though you are all still reeling from how quickly everything has happened with your mom - early February is such a short time ago and there has been so much happen in such a short time. I agree with you that the best place for her after discharge is where she can rebuild her strength with the skilled nursing staff to help her in the right direction. It wouldn't be good for her to be at home worrying about your dad and your sister and how they would cope with her immediate needs. As difficult as it is for all of you, I think your mom will benefit greatly from that facility.

As to the issues with your family - you have all been handed a huge emotional/mental/physical challenge and so much has happened in such a short period of time. That in and of itself presents situations in relationships - just be gentle with each other and remember you all love each other - this time is challenging for families and there will be some blips along the way.

There will be others along who may be able to address some of the specific concerns (ie scalp issues, etc). I just wanted to welcome you and tell you how sorry I am that you have need to be here, but so glad you found us.

Hugs,

Linda

[Patti B]

Hi Lori-

Welcome to the site. Lots of great people here to help give you support and information.

Having a cancer diagnosis, whether its yours or a loved ones, is so stressful so its not out of the ordinary for families to get a little freaky. I am sure that everyone in your family is as scared as you and your mom is. Its hard in the beginning, but believe me it does get better.

Oh....don't ever apologize for a long-winded post - thats what we are here for and believe me, we have all been there, done that!!

Hope to get to know you better and hope you keep us posted on how your mom and the rest of your family is doing.

Hugs - Patti B.

[Guest]

Such wonderful responses -- thank you all so very much for the great welcome!

Patti B - Yes. I used to be able to be concise but anymore... oY! My minf & head just run on & on. It's a point of frustration for me actually.

Yes. The sitch is all freaky & stressful. Scary in & of itself. Scary the way it appeared to come on so quickly. Scary how weak she's become in just one month.

LovesLife - Man. You nailed it. She went into the hospital on Feb 5th & it was just the day before that that she lost movement in her legs. So yeah; it's all happened in less than a month & I think you're right to say that we're ALL just reeling from it all.

She had a cold that started back in late November or early December. Doc couldn't get it cleared up with a couple/few rounds of antibiotics and finally sent her for a chest x-ray. That was our warning that something was wrong & who thinks too much about what seems like a simple cold or some bronchitis?

I thought she was getting waaaay too tired last year but I didn't push her on it tooo much. Mostly I figured okay; probably thyroid or something like that but when I asked her they'd checked that & it was fine. In retrospect I wish I'd pushed her harder. I mean if anyone would know about excessive fatigue, I would. And I DID recognize it but... she's my mom. And she's very stubborn. Which should be good in her (hopefully) path to recovery.

I love the way you put it...

just be gentle with each other and remember you all love each other - this time is challenging for families and there will be some blips along the way.

Exactly right. Not the easiest thing to do because everyone is so mired in their own fears I guess but you ARE right.

SandraL -- and everyone -- after talking to the dr. & considering that she's been in the hospital for most of February & considering how very weak all the treatments have made her, I've just come to the conclusion that the SNF is the only logical choice. And the best one for her.

We're choosing to call it a "Strengthening Spa" -- just sounds a little nicer and that IS the point of it. Course my dad, kook that he is, he's jokingly calling it the Looney Bin! OY!

Yeah. We tried the bring her home & care for her ourselves routine and my brother from California was even in then (so it was him, my dad & my sister there at the house) and THAT just did NOT work out well. It was all so stressful that daddy ended up in the hospital for 3 or 4 days. We just can't go THERE again. Like my sister (who lives with them) said, "I just can't deal with them BOTH being sick."

It's honestly feeling like most days are "off" days lately. My days are pretty hard with my own challenges to tell you the truth. THIS has just been SUCH a ... huge thing and has kinda wiped me out worse than normal. So honestly, even if I wanted to do more (which I desperately do), the reality is just that I can't. And THAT'S stressful too.

Anyway, guess I'm rambling. It's just great to find ya'll and to feel so welcomed and know that ya'll DO understand. Thank you so very much.

I'm still trying to figure out this forum so I do have one question. Should I ask the question about the scalp/skin issues in this section or where is best?

Thank you & gentle hugs!

Lori

[Bud Baker]

Welcome, Lori! Sorry you need to be here, but glad you found us. I'm another North Texan.

I was fortunate enough to be diagnosed early, and have remained cancer free for over a year since my surgery, so my situation has been very different than your mother's. But I wanted to welcome you here, and send best wishes for your mother.

[recce101]

Hi, Lori, welcome to the group! Your profile says you're in North Texas. Where? I graduated from North Texas State College (now UNT) in Denton in the late 50s, and my hometown for most of my childhood was West, just north of Waco on Interstate 35. But I was an Air Force nomad after my college years, then settled in Hawaii in 1972.

Don't apologize for long posts — they can be very therapeutic! Aloha,

Ned

[texasone]

Hey Lori,

Sorry to hear about your mom, but sounds like she's getting good care. The rehab hospital sounds like a good option. My step dad recently went that route. Three in my family were diagnosed with cancer last year, sheesh!

A cancer diagnosis is difficult for any family. I can relate to all the freaky reactions and stuff among your family members. I could hardly stand to deal with my sister the whole time was dad was in treatment two years ago. He lived about 4 hours from us, we both work full time, it was very hard.

I'm what I call a "recovering" control freak, and I think of my sister as the queen, lol.

I'm glad you came here for support, there are some wonderful folks on the site. There's also chat every other Tuesday night at 7 pm. We'll meet in the room again on the 17th though the chatroom's always open. Maybe you'll join us?

I'm hoping to get a local lc support group going soon, I could go on and on about that

Anyway, take care and I hope you'll be able to come see your mom soon.

Regards and hugs,

Trayce

[LovesLife]

Hi Lori - I love that you all still can laugh and make the best of some situations:

We're choosing to call it a "Strengthening Spa"

I laughed when I read that.

As to feeling guilty because you didn't pick up the signs - you might as well just let go of that. I think many of us spend some time feeling guilty about "whatever" we feel brought us to this place - stress, smoking, eating and feel guilty about missing "the signs"; however, I realized it really just made me feel bad. My mother-in-law's favorite saying is "It is what it is" and I really have just repeated that to myself over and over when my mind starts travelling down that bleary road. BTW, as a mom I know we try to protect our kids from things - I think we're just hard wired that way! And yes, your mom's stubborness will definitely work in her favor ... just so long as she knows when to ask for help or ask questions (which I'm sure she will).

As to asking specific questions (not sure if this was already answered previously) ... you would likely get more responses to your question if you post them under a specific forum heading (ie: General; Update; Good News, etc).

Anyhow, take care and I'll talk to you soon.

Linda