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I have a constant ache...


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I am blank, then I ache, then I am blank, then I ache...I just feel wiped out. I feel like I shouldn't be complaining as so many of you have been through so much worse. My folks have gone through so much, and I just cannot stand to watch it anymore. It literally breaks my heart. I don't want to complain, and I don't want to whine, but I do want to scream. I want to yell at whatever made this happen in the first place. This cancer has stripped my dad from the man he used to be into one fearful, yet ready for the next blow.

We had a rough weekend. Dad went in for an infusion on Friday night...felt great Sat. He was having nausea, etc...plus growing pain when eating. On Sunday night went back in as he had a fever...let me remind you that he had only three measly rad treatments left. Well...he had pneumonia in both lungs, blood numbers under 1, and couldn't drink or eat anything. He was infused, given antibiotics, put into quaranteen, and then that is when the heart started going crazy.

He has a heart that wants to beat too quickly. Generally it should be between 89 and 105 or something like that, but it likes to go to 140 or higher for a stint. He doesn't feel it, but the hospital thinks that it sets him up for possible heart attack or stroke. He is on meds, but they dont' seem to be working. They don't want him to leave the hospital until they are under control.

His oxygen levels are low, so he is on an oxygen machine as well. They may send him with the oxygen machine when/if they do get the heart under control. They said he may just have to be on it forever...this devastates him. I know in the scheme of the whole thing, it is not that big of a deal, but he is starting to feel defeated. One thing after another. Many of you will remember this was my biggest fear from the beginning.

They doctor at Mayo and that is five hours away...of course they were not at Mayo when this all happened, but in small town USA. I just want to steal him from the hospital there and run him away to Mayo where his team can take care of him.

My mom is trying so hard to be tough. I was able to stay with Dad in the hospital on Monday night so that she could sleep in her own bed. My sister went back to Texas after the weekend, my one brother stayed for the week while dad was in the hospital, and the other one lives there. He has been doing all the things we cannot help with, and he has to be tired too. I have my two kids to care for, one of which is sick right now...so as the weekend nears I think...do we go and visit - it is only 2 hours? I dont' want to get him or mom sick. I want to be supportive...this is such a hard spot to be in...of course, this is not about me, so it doesn't really matter, but I want to do right by them, you know?

OK...thanks for letting me vent. I realize I have been doing that more and more lately. I don't mean to be selfish. That is not like me at all. Every time I have a complaint, my husband asks if I have asked you all yet!!!

If anyone has any information about the heart...or the oxygen, please let me know. Post radiation pneumonia is pretty normal right?

Thanks, love, and prayers for all,

Jen

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Maybe you could call the Mayo people and describe what is going on with your Dad. They may give you an idea about what to do. Maybe, after the pneumonia clears abit, he would be strong enough to go there for an overall checkup and a second opinion. This is such an awful, all encompassing disease that truly affects the whole family. Don't over worry about visiting, etc. If anyone is under the weather it's probably better to stay away so he doesn't catch it. You're doing a wonderful job. Please tell him that there are many of us here who are long term survivors of SCLC. He has to join us! ((()))

Joanie

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Venting is ok. There is no getting around the fact that Lung Cancer sucks whether you are the patient of the caregiver. It hurts to see terrible things happen to our family. It just plain hurts.

((((hugs)))) to you, and prayers that things will begin to let up for your Dad your whole family.

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Jenn -

It just sucks all the way around. I understand how physically and emotionally exhausting it is. I can only speak from my experience -- I was five months pregnant with my first baby when my mom was diagnosed. Moving to be with her, caring for her/lifting her even the day before I had Caroline, staying up nights when I was exhausted because she was in pain, etc -- was ALL worth it. Somehow you will find the energy, you just will...not to say it isn't o.k. to take a mental health day too!

I know that I did everything within my power to help my mom and dad (still helping my dad to this day.) You will forever be grateful that you supported your parents through this time, and Jenn you will get back to a somewhat normal life at some time...although it will never be the same, you will get control again.

You are a fantastic daughter, a great mother and an absolute blessing for your dad.... it won't be like this forever.

Thinking of you during ths stressful time. Unfortunately, I remember it too well, and my heart breaks for you....but as you know, you are doing the right thing.

Love,

Holly

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You go ahead and vent all you want! My mom was/is my caregiver during my sickest moments (I love her for that, and for many things) and she did a great job, but I could tell it was hard on her, physically and emotionally.

It's weird you mention the heart thing, because I had the same problem during infusions. My heart rate (and blood pressure) would skyrocket. I think it was a combination of nerves and toxic chemotherapy. I had 2 EKG thingies and both were 'normal,' but I take Atenolol to regulate my heart rate. So, they really don't know why it gets like that with me (mine also would get up in the 130's and 140's!), but they certainly don't want it that high.

Hang in there!

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I had tachycardia too for awhile after a couple infusions. It was, as you say, 140-150bpm constant. I had blood transfusions and that helped right away. They gave me a couple bags of stacked red blood cells.

With the radiation/chemo pneumonitis, I was given high doses of prednisone to bring down the inflammation. It worked. Pneumonia and pneumonitis are two different diseases but look the same radiographically.

I should say, the blood transfusion made me feel like a million bucks. I was pretty wiped out before I got them. Thank God for donors. Thank you all very much if you donate! Saved my life.

Cindi o'h

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Like some of the others that posted, Mom too would feel wiped out and then she would be transfused and within a couple of hours would regain some strength, it is truly amazing. What level of oxygen is he at? My mom flexuated and for quite some time, she needed none. It is very possible that he will come off of oxygen. This disease really sucks. Remember to always have faith, love and a lot of prayers. You are doing the right thing, and never feel bad about venting. I have found that through the ups and downs of this awful stuff, these people on here, have been the most supportive, they truly understand. Even at the hospital, the nurses and Drs. do not explain things as much as these people. I have gained more knowledge here, than anywhere else. I agreee that you or someone should call the Mayo and see what they have to say. Good luck Jenn.

Hugs and prayers

Connie

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Jen:

Pneumonia occuring that is related to the radiation was something we were warned about as being possible, so in that respect, it's "normal" (just not something anyone wants!). Taking care of the under-the-weather kiddies rather than worrying about a hospital visit with your ill children will help them AND your folks -- everyone's immunity is probably down about now from the stress of dealing with this: it's not selfish to think of everyone's health by passing on another visit right now.

Mom has had some episodes of that 140-150 bpm thing too -- no one ever really explained the why of it to me. Once was her initial reaction to taxol treatment #1, but she did have a couple of these in the hospital at initial dx and one other time when she had pneumonia.

As someone else mentioned, couldn't hurt to inform the Mayo team of what's going on for their input. How much O2 is he on?

LOL on the 'did you ask this board yet' comment your husband makes! I can relate: I swear I run here for every little question or concern before I do anything too! What can I say? No one has led me astray yet and sometimes the advice here seems the only way we stay sane at times.

Keep us posted.

Linda

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Jen,

I hear the love and caring in your words...my mom developed radiation pneumonitis after she completed the rad treatments and it really took a good three wks for her to recover. She was sent home on oxygen and needed it 24-7 and she, too, was devastated at the thought that she would need oxygen for even the simplest of tasks. Jen, she did recover..after a short course of steroids and antibiotics (also had bacterial pnuemonia) but it did take weeks. She was *de conditioned* as her doc said and had lost a tremendous amount of weight so it took even longer for her to get her strength back. We had to coax her to eat (before the steroids kicked in)

Oh, sorry...feel as if I am rambling away.

Anyway, she is better and has begun to go shopping again with friends, out to lunch and even can play nine holes of golf...(and no oxygen)

I pray that your dad begins to feel better and I so identify with your *ache* I hate cancer and as someone here said...it affects everyone. Sometimes it feels as if my heart will literally break in two with sadness that I cannot *fix* this!

Lots of prayers and remember, we are here. Hugs, Jen and please keep us posted.

Libby

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A lot of good advice here already.

It's ok to vent. You have to. It's not selfish. You aren't venting to your parents, your venting to your friends- and we are here to support you so that you can support THEM! :wink:

It is a hard place to be in because you want to be all things, and that just isn't possible.

If your husband is as supportive as mine was, he will help with the kids. You are doing what you can. When you can't "be" there, "be there over the phone.

On a visit, bring foods for the fridge or freezer, bring reading materials, do things to inspire hope for your parents.

It's a helpless feeling a lot of the time, but remind yourself that this is just "right now", and that things will not always be this way.

Keep doing what you're doing and keep posting. It does help.

Prayers for you all.

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Jen,

So sorry to hear things are getting more complicated. We too have been having complictions and bouts of pneumonia/pneumonitis due to heavy chemo and some radiation. Lots of pleural effusion lately. Not the rapid heartbeat thing, but reduced oxygen levels and very SOB. We've tried the antibiotics and steroid thing, but to no avail. Tony's on oxygen 24/7 again. I guess all of these side effects are not that uncommon, but it just cheeses me off to see everyone doing so well with the treatment only to be waylaid by the side effects.

I'm blathering, but wanted you to know that it's okay to scream, whine, or whatever you want to do here. The frustration level gets really high at times.

I'd be a little hesitant about visiting your Dad with sickness in your house. Just one opinion, as I'm really paranoid about my husband catching anything more than he is dealing with already. My kids tend to get mad at me, as they want to visit their father more often.

Sorry again and vent away!

Welthy

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I can totally relate to your feelings right now. Anyone in your situation would feel that way, too. My dad finished radiation in January and is now fighting a battle with his recurrence, but also with pneumonia. He's been on oxygen therapy at home now for a week along with his breathing treatments, antibiotics and steroids. It is a common thing for pneumonia to develop after radiation, however, it never makes you feel good to know that it's "normal". I'll be praying for you.

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Though I have not posted much since the beginning of learning about this website. I have become quite a regular in making the daily visit to lchelp.org

I am Jenns brother and share all of her concerns. But let me say that even being here everyday for dad, that her efforts are truely admirable.

I appreciate this boards support for our family and unfortunate as dads situation is, it has brought us kids together.

Jenn, it is absolutely critical that you hang in there as a player like you have. It is you that inspires me at the same time you can count on me being here up the street for both dad and mom.

We all need you. Hugs!

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