Keep talking here. We're all listening and wishing you the best. Fear is
natural and normal. Don't try to suppress it. You can deal with it and be
a source of comfort and strength for the rest of your family. Hang in!
I just stopped home to feed the animals and let out the dog. We don't know anything yet. His right lung isn't working anymore. I forgot to mention that last night. My dad just left to get a PET scan and the doctor is suppose to be coming by to look at his CAT scan from last night and decide if there is anything left for them to do for him. A social worker came in the room talking about home health care this morning. Does that mean they might be sending my dad home to die? Well, you don't have to answer that. It's just one of many questions I have right now that I will get answers to soon enough I guess. I'm so scared. Thanks for your support you guys. It means a lot. I'll keep you posted as I can. Take care.
I'm sorry to hear he's not doing well, heph. You are all in my prayers.
The recommendation for home health care simply means that he will need some skilled care, but not enough to require hospitalization. It's good news! I'm sure he'd much rather be at home than at the hospital, and I'm sure that you guys would much rather have him there, too.
Of course we would rather have him at home! We got the news. I'll relay it as best I can because honestly speaking I don't understand all this medical jargon, and I'm slightly confused about a few things. Basically what it boils down to though is my dad is dying. It is cancer, of a very fast growing sort. It has spread. The cancer has gone too far to be cured, and the primary concern at this point is to make him as comfortable as possible. (Says the doctor who was not planning to schedule him to see an oncologist for another 3-4 days.)
He has a condition, which I cannot remember the name of right now, that will basically suffocate him if the tumor in his lung is not decreased in size very quickly. My aunt heard the news and called. She is the head supervisor for the oncology radiology department at the hospital in SC. Or something like that. At any rate, she called because what my dad has is treated as an emergency there. Radiation is started immediately whether they know "what" kind of cancer it is or not.
They, as I said earlier, were not even planning on having him see the oncologist for 3-4 days because they wanted to find out "what" kind of cancer it is first. My aunt said that those 3-4 days of waiting can determine whether he lives two weeks, or two years. Unbelievable. Ummm I'm guessing his doctor probably hasn't dealt too much with cancer patients. Thank god most of my family is involved in the medical field in one form or fashion. My mom made a few phone calls and he is starting radiation treatment to shrink the tumor tomorrow morning at 9 am.
They discharged him from the hospital so he's home now. Everything that is done from here on out will be outpatient. There's no telling at this point just how long he's got. We'll take whatever we can get though. I have not been able to get this poem off my mind today.
Lifes Laden Way
How has my heart
Wandered this way
Of sorrow by night
Grief by day?
How laden this path
My soul follows still
The tears are heavy
With broken will
Oh heart of hearts
Find you no peace?
Staring down still
At your empty sheath
The darkness of day
Is darker than night
It closes in slowly
Suffocating the light
Yet off in the distance
A silhouette shows
Something untouched
By this wind that blows
Though it bears scars
Of neglect of years
Forgotten, misplaced?
Not watered by tears?
What is this garden
Once fresh and green
Holding such life
Now riddled by weeds?
My heart does mock
How typical this shows
Of this laden path
That my heart does go
Oh garden you know
For you bear grief too
Of things overtaken
Of what sorrow will do
Of life choked out
By these hideous things
So tell me little garden
What song do you sing?
How is it you bear
By night and by day
The loss of what was
The beauty you gave
The silence is heavy
There seems no reply
Yet over my head
Comes a butterfly
He seems not to see
Anything but what is
For it is what he needs
That this little garden gives
So sorrow upon sorrow
Grief upon grief
My heart though broken
Does finally see
Life can be found
In the midst of loss
Beauty can survive
Deaths dear cost
Written 9-19-06 by Hephzibah
I am not going to give up hope that even though this is hard and it sucks in so many ways, something beautiful can come of this. Some how.
Edit:
P.S. I'm not as stone face cold as it could appear here. I did finally break down last night. Then when we got the news today I had to be removed from the room. It is coming in waves... as grieving usually seems to. I remembered something today. There is a strength to be found in weakness. Pretending to be strong and actually being strong are two completely different things.
Heph, has he been enrolled in hospice care? If he is dying then hospice can make sure it is with the most grace and the least discomfort. Hugs to you, I know it's hard.
Thanks JP. My mom works for hospice actually. I am sure that the majority if not all of our services will be free.
Hang in there doll. It's an ongoing nightmare but know that you've got support right here.
Hugs and prayers to you and yours -- talk if you wish, or not. Either way, we understand.
Thank you all so much for your support and concern. It really does mean a lot ot me.
I just got back from the appointment with the radiologist. *sigh* I'm a bit confused. All the test results are back finally and we got them. But we just got a completely different story from this doctor. That thing going on in his neck, restricting his breathing and the fact that his right lung is not working is not a priority at this point. What he has is Extensive Small Cell Cancer. It cannot be cured, but it can be put into remission if treated quickly and properly. At this point it does not look as though it has spread anywhere beyond his chest cavity and one small spot on his right hip. Though they will be doing a CAT scan to make sure it hasn't spread to his brain.
This is good news. It can't be cured but it can be stopped from spreading and therefore prolong his life some right? The reason the other stuff is not priority is because if they do the radiation on that tumor it will hinder the chemo he needs to keep the cancer from spreading, and lessen his chances of remission. Wow. So much information. So much. I'm having a hard time processing all this. But my heart feels better today. It doesn't feel like someone has a death grip on it. I think we're heading in the right direction here.
I could use a little help processing a few things though, if anyone has the time and energy to kind of walk through some stuff with me. I'm not asking for anyone to make this decision for me, I just need a little help processing the facts so I can make the best decision possible. It's concerning my end of this whole thing. I have been working two jobs. Four 14 hr days and two 8 hr days a week. I'm not even going to try to keep pulling that off at this point. That much is decided. My TMJ has been in full force since all this started and I feel like someone socked me in the left side of my face.
I had decided to quit the job working at the detox center because of the lack of flexibility within that job. Or at least drop to one or two days a week at the most. Not that it's a bad thing or their fault. However, when you are responsible for 15 kids you can't just walk out the door when you get a phone call and it's a 35 minute drive to get there from here. I'm stressed out. I'm tired. I'm wrung out emotionally and the kids have caught on already. If I continue working there I am concerned that what I'm going through is going to effect the kids indirectly, and possibly even directly at times.
On the other hand we have the gas station job. He can give me close to 40 hours a week. It's only five minutes from home. And heaven forbid something should happen I can walk out the door immediately without it effecting anyone. However, this is the same man who was sexually harassing me from the start of my job there. More stress. He's backed off a LOT though. He does not make any more comments at all, or touch me in any way. He actually barely looks at me even. But it feels like a risk staying because what if he starts up again.
Something has to give here. I'm leaning more towards the job at the detox center, but I feel confused because if I could keep that job I would rather keep that one, but not at the expense of my family. I just know I can't do both. When I went in to talk to my supervisor at the detox place she basically said it's all or nothing. Part-time is not an option. The gas station supervisor has told me he will work me as little or as much as I want and let me go to deal with stuff with my dad on a moments notice if necessary.
Looking at all this it might seem like the decision is crystal clear, or at least should be. But it's not to me right now. Everything is fuzzy and kind of spinning. I told my supervisor at the detox place I needed a few days to process everything and would get back to her with a decision by early next week. It really seems like if I'm going to have to let one of them go at this point. I know I don't have to make a decision today. It's just such a muddled mess in my mind right now.
We haven't talked to the oncologist yet. I think we'll get the full understanding of all this then. I'm not sure when they will be able to get him in for an appointment though. *sigh* They were talking about not until next week. Anyway, if anyone has anything to offer that maybe I'm just not seeing here, or thinking clearly about, or whatever, I would really appreciate a little help processing this much. This right now is the immediate concern for me because I'm not going to be any good to anyone if I keep trying to do everything. Ya know?
My first thought is to keep the gas-station job for all of the obvious reasons you've stated and just hope that the guy who was bothering you is not such a heartless piece of **** as to push himself on you at this time. You say that he's backed off? That's very good.
Yeah that's my first thought too. There's one other thing I forgot to mention though. Insurance. I won't get any through the gas station because I won't actually have full time status. I would however get insurance eventually from the other job. Aaah. But I just remembered there is a temporary insurance I can get through my car insurance agency for only like $15 more a month. It was available in CT. I'll have to check if it's available here. I don't see why it wouldn't be. The benefits at the detox job suck though. I thought they were good at first. You get two weeks vacation a year. Whooo hooo. Plus a lot of sick time, as well as several personal days. However, you don't start acruing any of that until you can actually use it. You can't use sick or personal time for six months. You can't use vacation time for a year. I just found all this out two days ago. Both jobs pay the same. LOL The more I talk the more clear this decision is becoming I think.
Sorry you have to go through all of this, Heph. Take care.
I think I'm ready to talk now. Thanks for the support. I do appreciate it. Today has been kind of rough. My dad is declining quickly. He had a pretty good day yesterday after getting the news that chemo could put the cancer in remission. Today he went for the MRI to see if the cancer has spread to his brain. He couldn't finish the test. Laying flat without his head propped at all apparently cuts off the blood flow to his head enough that he started feeling really dizzy and decided not to finish the test.
He's been having to hold his head down all day to avoid the dizziness and be able to breath. He's wheezing with every breath. He hasn't smiled all day. I can't say I blame him but man you guys. I feel like I'm watching my dad die. Right before my eyes. He's wasting away and I am completely helpless to do anything about it. I just have to watch and try to stay sane somehow. Try not to scream and shout and cuss anyone out because that's really what I want to do right now. I want to tell those doctors that they are waiting too long.
That we don't have a month to get moving here. Maybe not even a week. Granted I know I don't really know that, but man it sure feels like it. I want to tell them what for. Man do I. Someone. Something. I would like nothing more right now than to ride up to the top of a mountain and just scream until I'm hoarse and don't have any voice left. Cry until I don't have any tears left. And pound the living sh** out of a tree until I don't have any strength left. Obviously I can't do that so I just started drinking instead.
About 1:30 this afternoon actually. I'm not sure how much I've had so far, but it's at least relieved the tooth pain I was having. It turns out all this jaw, ear, and neck pain is a tooth abscessing. The same one from about two months ago. The clenching and grinding is only aggravating it further. Antibiotics took care of the infection before, but now I will have to get it removed I guess. It hasn't helped the pain in my heart much though. We find out tomorrow the estimated time he has left. I'm sure that he's probably more scared than I am. He started talking about closing down his business account tonight.
So he's not planning on going back to work. Which is reasonable of course, but I fear that he may be giving up hope. My mom said that he's given up hope in God. Granted, I'm not standing there either anymore, but to him it was so important, and it concerns me. If he loses hope in everything, what's left? To just die? I want him to have a good quality of life as much as possible until he does die. I can't control him though. How he chooses to feel, or react to things. I'm trying so hard to encourage him. To be there for him. To at least show him that I love him. No matter how he chooses to feel about all this. I still love him and I won't leave him.
God this sucks.
Wow, you are really bearing a heavy, heavy load. When you say "I'm
trying so hard to encourage him. To be there for him. To at least show
him that I love him. No matter how he chooses to feel about all this. I still
love him and I won't leave him.", I think you've summed it up. If you
can do that, then you are doing plenty.
Get that tooth cared for. You may feel you shouldn't be concerned about
that when your Dad is in such a state, but you need you strength and that
abscess will sap your strength.
Hang in.
George says it really well. Definitely about the tooth.
How is your mom doing, George?
sozobe wrote:George says it really well. Definitely about the tooth.
How is your mom doing, George?
The oncologist believes that the new tumor is non-small-cell cancer.
What that means for Mom is that it doesn't spread as fast as small-cell
cancer. So now the plan is to try a procedure called radiofrequency
ablation on it. We have an appoinment with a doctor who specializes
in such things this Monday. I hope she is a good candidate for the
procedure.
Geez, where to begin here. *sigh*
First and foremost, thank you everyone for your kindness and support. It means the world to me right now. It really does.
George, I am so sorry for what you and your mom are going through. I am thankful you have shared it because it helps knowing someone else is walking in similar shoes right now and really understands the struggles that come with all this. I wish both you and your mom the best, and I thank you for your concern and kindness here.
We got the report today. No. We got A report today and I've got to be frank here, I'm getting a bit worn out with getting so many different reports. I'll try to make this short and simple to understand, though I'm not so sure I understand it myself.
The oncologist today gave us good news. He doesn't believe the cancer has spread. There was a spot that showed up on my dad's right hip when they did the PET scan, however, he does not believe this is cancer because it didn't even show up on the x-ray they took. He's getting a bone scan just to make sure though. However, if that is the case it is good news because it means that it's not extensive small cell cancer, it is... errrr... dang... I forgot the name already. At any rate, that means it's confined and can be treated much easier and much more successfully than if it had spread outside of his chest.
The doctor even mentioned that approximately 15-30% of patients with this actually get cured. Not a high percentage rate, but still there's hope right? My dad latched on to that. He went from being completely down, hopeless, almost lifeless, to almost back to himself. Talking, eating, smiling, even joking around a bit. *sigh* So the oncologist sends us to the hospital so that my dad can start his chemo this weekend. He tells us that my dad should be feeling better within the next two to three days as the chemo will shrink the tumor significantly and he will be able to get around and breath much easier.
So off we go to the hospital. Hopes high, my dad even smiling as he walked in the door and giving the nurses a hard time as he is a pretty funny guy when he's feeling good. They go to put in the life port so he can have the chemo and the doctor comes back to tell us that the tumor has completely enclosed the Carotid Artery, much worse than they had imagined, so much so that he could not get the life port in. Not even partially. The reason he is not showing the normal symptoms that people with this show (such as swelling of the face, neck, and tongue, being really flushed, not getting enough oxygen, and so forth) is because his body has worked incredibly hard to compensate for this and has created an incredible amount of veins around the tumor. Again, much more than they had imagined possible.
However, his body will not be able to keep this up forever, probably not even much longer, and in essence most all hope is lost at this point for how much of a recovery, or even remission he will be able to make because the Carotid Artery is completely enclosed. Not only that. The people who have this as severe as my dad does, die feeling like they are suffocating. OMG How horrible is that? The guy might as well have ripped out my heart and jumped up and down on it a few times while he was at it. If my dad finds all this out he will give up hope and be gone in a matter of days I have no doubt. My mom has decided to keep it from him. However, just looking at her someone who had never met her could tell. So I am sure it won't be too long before my dad picks up on it.
I just don't know who to believe any more. What to think. What to feel. I feel like screaming at every one of those doctors... "If he's going to die just say it. Please. Just say it. And please. Stop jacking me around. I don't think my heart can take much more of this." I really don't.
I'm getting ready to head back to the hospital. My dad did good last night with his chemo. There have been no major side effects as of yet. He was still chipper and pretty up beat when I came home last night. God it was hard to leave though.
I'm really struggling with a couple of things right now though. Trying to figure out what's right. My mom doesn't want to tell my dad what the doctor said yesterday evening. I can understand why. She doesn't want him to lose hope and quit fighting, and neither do I. But wouldn't it be 10 times more devastating a blow for him to find out some other way or figure it out on his own, and then find out his family lied to him about it?
I'm going to try to find a doctor to talk to today. Hopefully the one who put in the life port last night. I want to hear what he said to my mom last night from him. My mom, can blow things up, and I, being in the emotional state I am at this point can very easily run with what she says just because she is a nurse and I'm just as hurt and scared as everyone else involved.
It's actually seeming to be a bit of a disadvantage at this point for my mom to be a nurse. She understands entirely too much of this medical jargon these people throw around. It's good in the aspect that she can explain things to me, but bad in the aspect that it is that much easier for her to take the worst scenario and run with it.
I need to understand this. What that Carotid Artery being completely closed really means. Last night as I was trying to sleep I couldn't help wondering why. If it is as bad as the doctor said it is why are we giving him chemo? If there's not much hope for remission or recovery why are we going to drag it out and make his last few weeks or months miserable physically and then mentally as well when he finds out that he's gone through all that for nothing? Why?
I don't feel it is right to do that to him. He deserves to live out his last days as he chooses to, not how we want him to. I don't feel like he's being given a choice here, he's just being led to believe something that possibly isn't true, being led to believe that we believe it to be true, but he will find out the truth. It is a way of life. I don't want to hurt him. I love him. I want to give him the chance to choose to fight because he wants to, not because he believed he could recover and couldn't, and then dies way more hurt, angry, and frustrated, and possibly even feeling unloved by the ones who love him the most.
