I am not ready for this

My mom had the hospice nurse come over today. Over the past few days it has become increasingly more difficult for him to speak, his voice is so hoarse sounding. I talked to him briefly today and he didn't sound like my daddy at all. It has also become more difficult for him to swallow. When he will eat, his food has to be very soft and Mom said that he isn't wanting to eat much anymore. More recently (last day or so), he has become disoriented and confused. Not sure if this is because the cancer has spread to his brain or what, but they do say it's possible since the small cell lung cancer does spread to the brain and bone marrow pretty quickly. The hospice nurse told my mom what I have kind of suspected was the case...he has given up...he is not fighting this at all and because of that his body is starting to shut down. They said if he continues like this, at this rate, they do not expect him to live much past a month.

I want to tell him he needs to fight and not give up so quickly, that we need and want him to fight and be strong for as long as he can, but strangely enough I can say that I understand. We can't make him fight! He has to want to do it for himself. It's amazing how much your will to live makes such a difference, but it totally does. He told my mom that he is tired of suffering and that he doesn't want to go through what his mom went through and have it linger. He hates what it is doing to his family and hates seeing us all so upset and in pain. He doesn't talk about being afraid though.

I just want to scream!!! I am not ready for this!!! I was not expecting this to happen so soon. Like I said in my last post, I thought he would be more like himself for a couple of months and then it would slowly get worse, but that's obviously not the case. We are losing him so much faster than I thought we would and I am at a loss as to how to handle this. I think I am still in shock. I thought I would have longer to come to the realization that we are going to lose him. I don't know what to do, what I should be doing to help my mom, to help my dad, etc. I feel useless. I need to be busy and have things to focus on other than the fact that my daddy is going to die. I ask my mom how I can help her and she doesn't know what she should be doing either. I mean, we are working on taking care of lose ends, wills, life insurance, benefits, etc, but what else?? I am at a loss. I feel like I am in a very bad dream.

I did find an organization in the Houston area called CanCare where they match either patients or caregivers up with people that have been through similar situations with Cancer. I am trying to find someone for my mom to reach out to that knows what she is going through. Someone from the organization left me a voicemail today, so I will call them tomorrow and see what I can get arranged for my mom. After I have something for her, I will likely try and find something for me, but I need to look after her first ya know.

So I guess that is all for tonight. I am tired, although I doubt I will be able to sleep much. It has been rough falling asleep over the past few weeks, so I am really tired. I will take my friend's advice and try and end with a cute story. It helped my mom feel good when we spoke tonight!

Thomas and I took Caroline to the pool tonight and I finally sucked it up and let her go down the twisty slide in the kiddy area by herself. I almost had a heart attack, but she did great, had a blast, and probably did it about 20 times after that. I will try and get pictures the next time we go, but she amazes me how fearless she is! Wish some of that would rub off on me!

Not sure what I was expecting

But this isn't it! I think I thought that when they told us that my dad had 6 months to live, that we would have had more time with him as we knew him before than I think we are going to have. I guess I thought that he wasn't that bad when he came home from the hospital, but after several visits over there, I feel that that may not be the case. Maybe I am just naive, but I guess I thought things would be somewhat normal (as it could be) for a little bit before it got bad and maybe this is as normal as it could be, but this is just not what I was expecting. Maybe this is just what I was hoping for and had convinced myself would happen to help me get through the moment, but now I am seeing that he is not the same person as he was a few weeks ago and how could he be really?? Guess I was just not expecting to see this much deterioration this fast. Not sure this makes any sense, but these are just some feelings I have been struggling with this evening after spending some time over there today and thinking back on my past few visits.

So I don't get it...

So Caroline is normally a very social little girl, not shy and clingy at all, but when we got her hair trimmed this morning, the moment we stepped inside the place (which we have been to a few times now), she was not happy! She clinged to me like I have never seen before and when we had to start the actual haircut, you would have thought we were physically hurting her. She screamed, cried, reached for me and no amount of snacks, toys, nothing would help. We ended up giving her a lollipop and after a bit it helped and she calmed down. Her reaction to getting her hair cut was just so odd to me and out of character for her. She only reacts that way when we go to the dr. Does anyone else have kids that freak out like this?? Whay do you do?

We have a diagnosis...

We found out officially on Wednesday, July 15th after he was admitted back into the hospital the day before, because of now, what we think was a broken rib. After meeting with the oncologist, he diagnosed my dad with small cell lung cancer. This type of cancer typically spreads quickly, usually to the bone marrow and/or brain. We do not know if it has spread and he has decided not to have the MRI or bone marrow scans necessary to find out as he has decided not to pursue treatment. The oncologist indicated that patients with small cell lung cancer that do not receive treatment are not expected to live longer than 6 months.

We had a good conversation with the dr where we talked about the options and risks associated with treatment. I am sure it sounds crazy that he has decided to not even try treament and it did to me initially (and still may a bit), but this is the decision he has made. The fact that he has CLL adds serious complications to the situation and course of treatment. If he didn't have CLL, it would be somewhat less risky, but the fact that he does AND the fact that his body didn't handle even a very light dose of chemo the 1st time he had it makes things even more complicated and risky. The chemo he received the 1st time worked almost to well in that it has made his white blood cell count go through the roof over the past year or so, while his red blood cells and platelets are extremely low and not coming back up at the rate they should be. The dr indicated that they could not give him a low dose of chemo with this type of cancer, that they would have to be very aggessive. If his body reacted the same way it did the 1st time, he may not even survive the treatment. It would likely wipe out his platelets and red blood cells and if they didn't come back quick enough (or possibly at all), we would likely lose him pretty quickly at that point. His quality of life also played a huge role in his decision. He watched his mom battle cancer for 5 years and has said to us, repeatedly, that she had no quality of life during that time and that he hated watching what she went through. That was the only time I had ever seen him cry. It has so hard on him. He has said to us that he doesn't want to live his life like that and I understand that. He would rather spend as much good time with us as he can.

It is hard for me to say and I almost feel guilty in saying it, but I do understand and respect his decision and feel that he has made the right one. The risks associated with treatment are very high and if he proceeded down that path, we could lose him sooner and I am not ready for him to go! I feel that 6 months is better than nothing. I have had a really rough few days coming to terms with this and I am not real sure I there 100% (maybe I never will will be). I pray daily for the strength to be positive and strong for he and my mom and to enjoy the time I have left with him and not waste it being sad. I know in my head that this is what I need to do, but getting my heart to fall in line with this seems damn near impossible as I know, from going through this with my grandmother, that we have a very painful road ahead of us! So for now, I am trying to take it day by day and deal with what comes up.

One of my best friends gave me some really good advice the other day! She said to try and end your day by thinking of something good that happened that day, like something cute Caroline did or a hug by Thomas! I think this is wonderful advice and am trying to make it a point to do this throughout my day. I will try and do the same on the blog as well by posting some recent pics of Caroline!

No real news yet...

So we went to the dr with my dad last Tuesday to get the results from the thoracentesis. The test results came back inconclusive, so he had to go into the hospital for another procedure last Thursday where they went down his throat and took pieces of the masses for biopsy. They indicated it would be yet another 2-5 days until we get the results (go figure). We have a dr appt this Friday, so this will be a long week! Once we get the actual diagnosis, we can start discussing treatment options. The dr did say that his course of treatment could be tricky because his red blood cell and platelet counts are still so low from his 1st round of chemo he had a year or so ago for the leukemia. He seems to be feeling a little better with a bit more energy than he has had, but he still is feeling pretty bad I think. No update on the heart issues he is having. They want him to get this issue diagnosed 1st and then we would tackle that afterwards.

It's been hard putting my feelings about "not knowing" yet into words...it's like since I don't have a diagnosis yet, I still have this shred of hope that the dr will come back and say they were wrong and it's just plain pneumonia, but unfortunately I don't think that is too realistic at this point. I am having a hard time thinking about other things than this. Work is tough because it just isn't important right now, but I need it to try and keep my mind off of things even if it doesn't work all that great right now. Things like this really put things into perspective.

So I guess that's all for now. I appreciate your thoughts and prayers and just ask that you keep on praying for him.

A cute Caroline story to end on a positive note: she has started putting Thomas and I "to bed." It's really cute. She will come up behind us and push on us and tell us to "lay down." If you don't she gets frustrated with you for sure. When you do lay down, she will put blankets on you and lay down next to you and pat you (hard), while singing "goodnight mama, goodnight mama." If you get up before she is ready for you too, she will push you down and in a more firm voice, tell you to "lay down!" She does it to me, Thomas, and the dog. It's pretty stinking cute!

Haven't posted in awhile

I have not been real great at posting these days. We have had a rough week and I am only afraid it is going to get even more so. Things with my dad have not been improving as I had hoped they would. He went back to his PCP this past Tuesday for a follow-up visit and another chest x-ray. Results from the x-ray indicated that even though he had been on oral antibiotics and been receiving antibiotic shots for a couple of weeks now (btwn the 2), the pneumonia had gotten worse in one of this lungs, so they sent him right over to the hospital to be admitted. Our close friends watched Caroline so that we could go up to the hospital. (Thank you again!) When we got there, he was still in the triage area of the emergency room and they were giving him oxygen and an antibiotic via an IV. He had received a CT Scan of his chest earlier. They ran more tests the next day (blood work, EKG, etc). His oncologist came to see him the next morning and indicated that there was a mass in one of his lungs. They were not sure if is the pneumonia or some form of cancer (lung/lymphoma).

I went to the hospital Wednesday night after work and the pulmonary specialist finally showed up at about 8:00ish and basically indicated the same thing about the mass in his lungs. Although since I got to hear it for myself, it sounded to me like the probability of it being the pneumonia was less likely. The doctors know what these things look like....They also indicated that that they saw signs of COPD/emphysema because of his 50+ years of smoking.

They ran a thoracentesis Thursday morning which is a procedure where they extract fluid from the space between the lungs and the chest wall. Thomas and I went up to the hospital today for a bit and got to see both his oncologist and pulmonary drs. They finally released him from the hospital, but not before telling him that he has Aortic Valve Stenosis, which is the narrowing of the aortic valve. He will need to see a cardiologist for that early next week as well. What else is going to be thrown our way...isn't it enough that he may have cancer??

We have not gotten the actual results back from the thoracentesis yet, but the drs seem to be preparing us for the fact that it is cancer. We are supposed to have a dr appt Tuesday of next week with the pulmonary dr where we will hopefully get some answers. I want to just stop time right now and go back and erase this past week. I am trying so hard to remain positive and strong for my parents and I think I have done an okay job at that, but it's incredibly hard! That's my daddy they are talking about and seeing him in that hospital bed broke my heart. I am so scared! I want Caroline to know her Pa Pa and truly understand what a wonderful, loving man he is and for her to know how absolutely in love with her he is. When I talk about her or when he sees her, his face lights up...

So I guess that's all for now. Sure wish this blog wasn't turning into what it has been about so far. ..I will rey and be better with posting.