Friday, June 10, 2011

Thank you all! And an update...

I know it has been a really long time since my last post, and I wanted to apologize for that yet again.

But more importantly, I wanted to thank the many of you who have left comments wishing well to both me and my father. It truly means a lot and the fact that you guys took time out of your own lives to take concern for mine is important to me, and I do not want anyone to think I have taken it for granted.

It looks like we are in the home stretch of my father's illness. Cancer is not exactly known for playing fair. But in his case, it gave him more than ample warning before it decided to just take over. That may sound harsh -- but the sad truth is that what he has now started out as localized bladder cancer; which, if you must get a type of cancer at all, is one of the better ones to get. I say "better" only because in most cases it is extremely slow-growing and non-aggressive. (Please keep in mind that I am NOT a doctor; I am merely repeating what has been explained to me. So don't take my word as gospel on this. If you have any questions regarding that matter, or any health matter -- you should take them to your doctor and heed actual medical advice and not mine).

The oncologists have estimated that my father has been living with this for perhaps as long as 25 years -- which is absolutely staggering to everyone who has examined his case. The main tumor has grown so large, and is taking up so much of his abdominal cavity, that it has literally crushed his kidneys to the point they can no longer function on their own. It has also spread to multiple organs and the lymph nodes. Moreover, it didn't just "sneak up" on him without warning, as some cancers are known to do. He has had symptoms since at least 1987.

Yes, you read that correctly. 1987.

How has he lived with the pain all this time? I couldn't tell you. Don't think that the rest of us sat passively by all that time, either. He was urged to see a specialist for decades -- and not only by family, but several GP's have also told him over the years to seek out further testing and treatment. But he refused to go. Why? I have no idea. He wouldn't tell us why then, and he still won't tell us now. So sadly, the moral of the story is that an ounce of prevention -- for which he had a very, very long period of opportunity -- would have kept him from dying the way he is going to, and at the young age (by modern standards) of 65.

I would be lying if I told you there's not anger on the part of my siblings and I. It hurts that we were not enough to make him want to stay healthy back when he had the chance. The things we have had to do and the choices we have had to make on his behalf have not been easy ones. And at times during the last month, he has made a point of telling us he was mad at us, he has blamed us for his being in the bed he is lying in because we forced the issue and sent him to the hospital. We hope that these statements are mostly out of his understandable fears -- but knowing him, the answer is "who the hell knows?" We all know that sometimes it is easier to blame others than to admit you screwed up. He insists that had it not been for us, he would still be at home, same as always -- when in reality he would have died from kidney failure somewhere around the first week of May had we not physically forced him to go to the hospital. (In fact, when he was admitted, his blood was so toxic that the doctors warned us he might die within hours, even with the emergency treatment they were giving him.) And all things considered, looking at what he is having to go through now, we do sometimes lie awake at night asking ourselves if we did the right thing.

I wish I had gotten to spend the past months as I have for the past few years -- blissfully reviewing the various goodies I love and sneaking in snarky comments about how hot Ryan Reynolds' abs are. Instead, I have spent the time learning first hand how screwed up the medical system is when it comes to being the family of the patient. From plenty of personal experience I already know the ins and outs from the patient's side -- and let me tell you, I far prefer being the patient and being in control of the situation, or should it call for my advance directive determining my shots. Anyone who has also been there can tell you it is an exhausting, seemingly never-ending fight with insurance companies, hospital administration, keeping the independent hospice agents who roam the hospital corridors off your back, and yes, even the hospital staff themselves sometimes.

There are a lot of wonderful, caring Doctors, RNs, LVNs and other support staff members out there, and he has been lucky to have them taking care of him. There are also some who you have to ask yourself why they ever chose medicine in the first place (money, no doubt). I could tell you enough horror stories from the past month alone to keep us here another month -- at least.

I wish I could tell you guys that this will at least end in some sort of closure for him and for us. And I think if I could tell you that it would probably give the story more of a bad made-for-basic-cable movie feel -- but that wouldn't be true. In the end, because of the nature of my father's personality, we are going to be left with more questions than answers.

I am not going to end this post with some sappy urgings to go tell a relative or a friend how much you love them, or to go randomly hug people. There are enough other blogs out in the world you can get that from -- and that's just not me. Glurge has never been one of my strengths.

But I will tell you that I cannot stress enough how important it is for the sake of those you love, or if you just have strong beliefs on what you want done in the event of a serious medical condition. So many things, even horrible things like cancer, have so many more options the sooner they are caught. And in the event of a serious situation, one of the best tools to have on your side (besides a good doctor) is an advance directive or a living will (and heads-up, fellow Californians -- you can fill out an advance directive form for free. All you need are two witnesses who are not related to you, nor are your caregivers, to watch you sign the form) or again, depending on your personal situation, maybe granting power of attorney to someone. These documents map out whatever it is that YOU want done during a time when you may no longer be able to make those decisions. Without something in place, your family or partner or whomever, even if they know your wishes may not legally be allowed to speak for you. In those cases, it is up to whatever your state's protocol/laws dictate happens to you. From someone who is going through the end of a parent's life with no very little say in anything because he had nothing in place, I think that one of the kindest last things you can leave your loved ones with is the knowledge that your last wishes -- even if they did not agree with them -- are being fulfilled. Please don't make them go through the process of having to watch you go endure things they know you didn't want -- or worse, be asked to make the choice as to whether you live or die (unless, of course, they are the power of attorney; in which case they have agreed to take those choices on). I am probably doing a horrible job of putting this experience into words, but if this makes sense to just one person and they take my advice to heart and it helps their loved ones when the time comes, then I will feel like something good came out of this.

Once again, I thank you all from the bottom of my heart, and I vow that there will come reviews once again.



lunaburning said...

I've been there and my heart goes out to you. I lost my boyfriend of 14 years to throat cancer several years back, and although he battled it for 18 long months, he never left a will, or made any arrangements, and spent his last months on earth a very bitter and angry man. When I asked him why, he chose to go out that way, he told me that he did it to make it easier on me. That if I could learn to hate him, then his passing wouldn't hurt so much. A twisted fucked-up logic to be sure, but if you knew the man... Well, it made a kind of strange sense. Used to listen to the Blue October song "Hate Me" during that time, which was eerily fitting to the whole situation, but I can't stand to hear the song now.
Anyway, you don't know me, I'm just a long time reader of your blog, and I just happened to check in today, and could totally relate to your post. Just wanted to let you know, that although I can't offer any answers or say anything that will allow this to finally all make sense (Cancer's a bitch. There's no sense to be made of it) that there are people who get it.
Also, thank you for having the courage to write about the fact that not all of us get the sappy, beautiful"Terms Of Endearment" good-byes that everyone would like to believe in. For some of us it's much, much more comlicated. Take care, and my best to you and your family.

Gigi said...

Luna- Thank you and let me say I am sorry for the loss of your boyfriend as well.

And thank you for not taking me to task for revealing that sometimes Hallmark endings are just for commercials (I suspect that is going to happen at some point from someone). You are sadly so right that sometime the end is just a sad and bitter mess.

Thank you so much again.