Bill, Bethany, anyone else with sick parents. I need help with my very, very crappy day.

[FaithManor]

My dad was supposed to have open heart surgery tomorrow for a triple bypass - genetic issue...all of the men in his family go through this and all of them have GORGEOUS, COVETED cholesterol levels. Apparently, they have narrower than normal blood vessels. Sigh...praying my boys did not inherit this y chromosome trait.

 

Anyway, this morning the surgeon called to halt the surgery. Dad's chest x-ray showed two, 3cm nodules in his lungs. I'm trying not to think the worst and the doc was not reassuring. Dad has never smoked, nor has he lived with a smoker. But, during his 8 years in the Air Force - year number seven - he was badly burned when aviation fuel exploded. We know his lungs were singed a bit from breathing the searing air and a little intake of fuel. So, I keep hoping it's just scar tissue, but I don't understand why it would show up some 42 years later. Then when I think I am able to THINK about something else, I suddenly think I should be preparing for the worst and how I will support my mom through this, and homeschool, and keep up with dh's currently terrible work schedule, and ds's preparation for AP's and ACT, and......

 

Overwhelmed, I guess and then I feel guilty for feeling overwhelmed because I'm not physically going through it. I'm in good health, and this is what family does, this is what children do for their parents. I'm a natural born fixer, always have been. I'm not a good sit and listen, fuss over someone, do all of the emotional support stuff though I'm trying so hard to become good at that. I'm this person - okay X vegetarian casseroles need to be baked and in the freezer by date Y, X doctors' appointments need to be covered, the oil needs to be changed in the car so he won't think about it, the table needs to be moved (when my mother had her knee surgery), medicine J at 10:00, check...that's me. I don't do the emotional stuff at all well.

 

I cried my way through ds's geometry lesson. I choked my way through chemistry. I HATE myself for being emotional.

 

How do you all manage this? What's the magic trick? I pray, my mouth goes dry. I try to meditate, my mind won't shut up. I go for a walk and find myself kind of aimlessly wandering and not really relaxing, and food tastes awful.

 

I'm hitting the gym tonight to burn some energy off on the treadmill and weight machines in the grim home of clearing some cobwebs though I feel like a slug right now.

 

If you have any words of wisdom, I would appreciate it.

 

Thanks,

Faith

[nono]

Just hang in there. :grouphug: :grouphug: It's a bumpy ride. And it may not be short. I've been on this trail for 5 years now. The thing is, in between all the insane moments, there are treasured moments too, that will keep happening, right up until the end.

 

Remember to breathe deeply. And regularly...

 

:grouphug:

[unsinkable]

((Faith))

 

You've got some shocking news a few hours ago. It's ok that you're processing it.

 

Give yourself a chance to get used to the news and just be with it.

[Luckymama]

Oh my goodness Faith :grouphug: I spent four years massively stressed, from the time Mom was diagnosed, through her illness and death, the year after her death when I started suffering panic attacks, my dad's sudden death, and the settling of their estate. June 2008 through June 2012.

 

I didn't handle it well at first. I didn't take care of myself while I was busy taking care of everyone else.

 

What worked? Lots of TeA time with dh, weeding, exercise, reading light-hearted books. Trying to be so exhausted by bedtime that I could sleep well. I relied on my older kids to help with food preparation and cleaning. I said no to outside commitments that I would have otherwise said yes to, because I knew that those activities would increase my stress.

 

I cried in the shower a lot.

 

So sorry :grouphug: I hope that the nodules are just scar tissue.

[*********]

Oh Faith. I'm so sorry about your dad.

 

I don't know how I'm getting through it, honestly. I wish I had something more profound to say, but I'm not that deep, LOL. Some days I'm fine, other days I'm a freakin' mess.

 

You just do it. Because you have to. Because you have no alternative. Just like all the hard things you've done in the past, and all the other hard things you'll do in the future.

 

It's ok to be who you are. I'm emotional. My sister is not. And neither of those are right or wrong, they just *are*.

 

Give yourself permission to feel what you feel. It is OK to think the worst. Really, I promise, it is. Because you're going to anyway, so don't beat yourself up.

 

Cry when you need to. Plan when you need to. Fall apart when you need to. That's how you CAN move on, pick yourself up, and keep doing it.

 

I totally get the guilt that comes with feeling sorry for *yourself* when "It's not you going through it". But truth is, it *is* you going through it. Life doesn't happen in a vacuum. This is your experience. It's no less valid than what your dad's experiencing.

 

Call on your support system. Give others the blessing of helping you in whatever way you need help. Cry out to the Lord. He is here. Even when you feel so alone in this, He is with you. I find sometimes I feel very alone while coping with this. Like no one else could ever understand the pain that this is causing me. And you know what? No one does. No one has my mind, my experiences, my bond with my father that I do. But the Lord is my comfort always. Even when he takes my dad home with him someday, He will be my comfort. THIS is what I know.

 

Most of all, love on your dad, however it is you do that. Use this time to say what needs to be said, do what needs to be done.

 

Faith, I'm so sorry. Posting here on the Hive has been a tremendous support for me, perhaps you'll find it's one for you, too. So many ladies here have walked this path before. I have a new dear friend from the boards who lost her dad around the same time my dad had his heart attack. She's been a Godsend, truly.

 

I'm always just a pm away. I will hold you up in prayer.

[Tammyla]

:grouphug: (((Faith))) :grouphug:

[catz]

:grouphug: I will say it is TOTALLY possible this is scar tissue. Sometimes this stuff doesn't turn up until you're looking hard for something. I had stomach problems once and they found a mystery spot on my liver during an ultrasound. Never amounted to anything, has never caused me a problem.

 

My dad had 5 way bypass. Junky genetics here too. He also had another heart problem previously that we thought might take him to the transplant list. It took a year or so of many up and downs to find a drug combo that could control his symptoms. When he first started having problems, it was some of the most stress I've ever experienced. Learning to enjoy each moment, taking care of myself including diet and exercise made a big difference. There's no magic trick. It took awhile to get there. Take it one day at a time. Give yourself a few days to feel weepy and depressed about new news.

 

I used to get so bent out of shape every time my dad went in for a heart check. Sometimes they change his meds and he has down times and that's stressful too. My dad, who was given a few years at best, is doing well going on 15 years later at almost 70. His latest physical accomplishment was a 9 mile hike in the Saguaro Desert. His bypasses are holding well as of last fall - he had a full scan. Tears of relief.

 

Take care of yourself and try not to jump to conclusions yet. :grouphug: :grouphug: :grouphug:

[Twigs]

:grouphug: :grouphug: :grouphug: to you, Faith and prayers for you and your family.

 

 

… I don't understand why it would show up some 42 years later.…

My first thought to this was that technological advances over the years may be why it is just now showing up.

 

more :grouphug: :grouphug: :grouphug: and best wishes.

[Spy Car]

Sorry Faith.

 

Why are they stopping a heart surgery because he's showing evidence of lung nodules? I would ask in a demanding way. What's it got to do with the price of the tea in China?

 

3cm is at the low end of where lung nodules have to be before they are considered "concerning" ( that is exactly the threshold). But lots of lung conditions can show up on X-rays looking like nodules. Having ones lungs scarred by fire, or having past infections, all sorts of things. X-rays are blunt sorts of scan.

 

And what—heaven forbid—if the nodules are cancerous? They are not going to operate because he may have a slow moving condition and/or one that might respond to treatment.

 

As you may remember my father ( also life-long non-smoker) was discovered with nodules the same size as your father's in his lungs. In his case it was lung cancer (non-small cell carcinoma) but it was slow growing in the first place, and he happened to have a genetic mutation that made his cancer very treatable with a drug called Tarceva that has had no side effects, and has been keeping the cancer at bay. Today my father is doing very well.

 

When doctors told us he had months to live ( many moths ago) I called BS, and said you don't know the man, and you don't know the spirit of our family.

 

You ask how (we) and I get through it? I move into advocacy-mode. That means knowing what I'm talking about, and engaging with (and sometimes challenging) doctors so decisions about what is going to happen (and what is not going to happen) are well thought through. Pity those who have no advocates, because the system can let them down.

 

I also do my best to keep those doctors who have no bedside manner away from my dad. I've had to make clear (multiple times) that those with negative thoughts should discuss their fears with me (not him), and I would be the conduit of their opinions. That way news gets delivered in ways that are psychologically palatable, and it helps ease a patient's concern that they have to be their own advocate (which is the lifting of a huge burden).

 

I tell my dad his job is to be well and I will deal with the doctors. Some of whom are great, and some he's fortunate to have protection from.

 

In this case there are further scans that could be done. A PET/CT would be worth having. The real test would be a guided biopsy with a big enough sample that genetic testing could be done if warranted.

 

We are of the "rage against the dying of the light" mentality here. So far that is working.

 

I wish you all the best Faith,

 

Bill

 

ETA: Get medical power of attorney if you have not done so already.

[Harriet Vane]

:grouphug:

[Mama Geek]

I don't have any other advice, but wanted to offer :grouphug:

[FaithManor]

Thank you all so much! I really appreciate it.

 

Bethany, you are so wise and I'm going to try very, very hard to remember your advice.

 

Bill, you are right so much on the medical end, and if there is one thing I can do, it's the medical advocate thing. I am a take NO PRISONERS kind of person which is why some doctors love me, most nurses like me, and some docs think I'm the devil with a nice hairdo. I've already had it out with his cardiologist.

 

At this point, dad's health is excellent. His surgeon admits dad's body in all other respects is 20 years younger and his heart problem was caught early. He's tried to be vigilant due to the genetic history. So, he has no heart damage at the present time. From my perspective, if the stupid nodules have not caused him a health crisis yet, operate now BEFORE he has a heart attack. This is a no brainer to me. My parents, ever the children of their generation in which doctors were demi-gods and one does not question their judgment because they are smarter than you :huh: take whatever they are told in a sort of, well, Princess Bride "As You Wiiiiiiiiiiiish!", bizarre way.

 

I am angry about the surgery being postponed and here is the kicker, because it was postponed until the results of his scan on Monday, some of the surgical team is going on vacation so it will be nearly two more weeks if all is to the doctor's liking with the scan before dad can have his surgery. The surgeon is apparently a prima donna who hand picks his favorite squad and if he can't have OR tech X, he doesn't operate on non-emergency patients. Apparently, the fact that my dad's heart is a ticking time bomb, does not qualify him as emergent.

 

I'd like to kick the surgeon to the curb! Were it entirely up to me, the man would be grabbing his favorite OR tech tomorrow and by 2:00 p.m., my dad would be in recovery, or bye, bye, I'm finding a surgeon without the attitude. But, I'm trying not to treat my mom and dad like little kids and ultimately, he has to make these decisions. I.do.not.like.my.mother.having.power.of.attorney. Don't get me wrong, she's the best mom in the whole world. However, she is WAY too trusting and she doesn't question a thing.

 

Sigh...I'll figure it out. I just need to process all of this and work some negative emotions out of my system so I can move forward.

 

If I can possibly get them to agree to let me go with them to see the surgeon again tomorrow, I am likely to raise the roof.

 

Thank you, thank you,

Faith

[justasque]

If it helps I have some scar tissue on my lungs. It shows up every time I need a chest x-ray, but they compare it to older x-rays and it hasn't changed, so we don't worry about it. If you could dig up some of your dad's older x-rays, if he's had any, that might help to put aside any concerns.

[unsinkable]

Any update?

[*********]

I was just thinking about you this morning too, Faith.

[FaithManor]

Hi, Thanks for asking!!!

 

I'm sitting by the phone waiting for the results of the CT scan this morning that were supposed to be rushed. If I said I was patient, I would be lying of course.

 

I've had a very unsuccessful "go around" with his surgeon. Dad needs his heart surgery regardless of those two less than 3 cm nodules that have a high statistical chance of being scar tissue from his burn injuries in the Air Force many moons ago. So, in my book, letting him sit like a ticking time bomb while they worry about it, isn't an answer. If he has a massive coronary, what good did finding out about those nodules do for him. Besides, his pulmonary tests were beautiful and the rest of his body is "20 years younger" as his surgeon keeps saying. GRRRRR! My sister, ever more zealous than I is on round two with the surgeon.

 

I guess our hands are tied until that CT scan report comes in. I'm trying to keep busy. DS and I are about to begin another geometry lesson, so maybe that will help the time pass.

 

Faith

[justamouse]

Pity those who have no advocates, because the system can let them down.

 

 

 

Bill

 

ETA: Get medical power of attorney if you have not done so already.

 

 

 

SO TRUE.

 

Unfortunately in this day you have to almost be your own Dr, ask questions, challenge, and generally be a pain in the keister, all the time. Some Drs will love you, others will hate you, but better you advocate than give them up to the system.

 

:grouphug:

 

We went though this for 10 years with FILs Alzheimer, and my MIL, God Bless her-I mean that sincerely- would just listen to the Drs. It was Dh and I that had to advocate.

 

I pray you strength.

[Desert Rat]

:grouphug: :grouphug:

 

I hope you get some answers soon. Watching parents get sick is hard. I'm like you, Faith. I like to fix everything. Sometimes you just can't.

 

Didn't see this the first time you posted, so I just wanted to add my support.

 

My journey with my dad ended last year. My journey with my mom is now beginning. It's a long road. Rely on friends. Find support. There are many kind souls here who will have good advice and lots of love.

[unsinkable]

That is really tough.

 

I hope they clear your dad soon, like yesterday, so he can get his surgery.

[fraidycat]

:grouphug: I hope they get going on his surgery ASAP and that the nodules are just scar tissue from the explosion.

[Spy Car]

Wishing you and you dad the best Faith.

 

Bill