Reflections on the past

[Jolena]

May 31, 2007 will forever be ingrained in my mind. That evening, at almost midnight I had an IM from a relative that caused me to not only reflect on my past but consider the future without my father.

He has cancer.

Not only does he have cancer in his kidney, but it has spread to cover almost all of one lung, and completely over the other. He now has what consists of chocolate syrup like liquid filling both lungs. Enough to withdraw a litre of the fluid upon admission to the hospital, with room for much much more.

24 hours later, and I now know that the cancer is malignant and has been present for quite a long time without detection. Kidney cancer can apparently go on for quite some time without any detection through blood work, only coming up for scrutiny when certain symptoms present themselves. Symptoms such as increasingly shortened breath over the period of 3 days and a severe pain in the upper abdomen, resulting in MRI's, CAT scans, bloodwork, chest tubes and all the other lovely things associated with disease.

If I sound bitter, I am.

Monday there will be three chest tubes inserted into my father, who has always seemed to be invincible, no matter how irrational that is. My father, who has always been the pillar of strength and power to me. My father, who helped me raise my oldest son when I had noone else.

My father who is now lying in ICU on 3 liters of oxygen, and who can't hold a ten minute conversation with me without being out of breath and wheezing.

We'll know what course of therapy there is to choose from on Monday night, with the help of 3 oncologists. I'm positive chemotherapy will be in the works, though at the stage that this cancer has taken, I'm not entirely sure it will be effective. And now I'm left with the reflections of my past.

I don't think that I really expect anyone to have comments on this, or even to offer sympathy. This is just something I needed to do to make sense of the whirlwind of emotions, regrets, thoughts, and memories that are going through my head right now.

I don't want to lose my dad.

[Ignot]

Sorry to hear that. It sure puts life into perspective when things like this happen. Best wishes to you.

[Stanley Burrell]

My dad had renal carcinoma and the only way they picked it up, like you had mentioned (with the unnoticeable symptoms being present) was his literally taking a really hard hit on his side in a racquetball match to make blood visible in his urine.

I am really, really sorry. I sincerely hope things go as well as well can go for your father and those affected by such an illness.

[Jolena]

If it hadn't spread as far as it had, my outlook would not be so bleak, but at this point it doesn't look very good as far as his chances in recovering. Cancer is such a frustrating thing.

[Ilvane]

I am so sorry to hear about your dad.:(

It always amazes me when cancer can be inside a body and be undetected for so long, but it happens all the time with patients I have seen too...I just hope and pray for your dad to pull through this, and that you be able to stay strong through it all.

<3

Angela

[Asha]

My best wishes go out to you, hon.
And I'd like to mirror Stanley's thoughts in the hope everything will go a well as it possibly can for your father, you and your family.

[Miss X]

Sorry to hear about your Dad Jolena. It might not help, but a lot of my patients are oncology patients and I've been amazed by how much positive thinking and good support networks help them.

Best wishes to you and your family.

[Jolena]

You know, having had cancer myself (though my own case was a drop in a bucket compared to the storm that my father is facing) I do believe that positive thinking and support networks help. When I had that conversation with my dad yesterday, despite the fact that he couldn't speak more than a few sentences without wheezing and coughing, he was all sunshine and rainbows. I don't know if that was for my own benefit, for his wife who was sitting next to him, or for his own. Maybe a combination of all three. But he is ready to fight for his life, he says. I hope that is enough.

[Jolena]

Just jotting stuff down here for my own sanity.

Dad had surgery Monday and they inserted three separate chest tubes to drain the fluid off of his lungs. He's now had 6 litres of fluid removed from his chest. 6 fucking litres. I can't even imagine.

Needless to say he's breathing better, and they did keep him on a ventilator for 24 hours for observation, as well as park him in ICU while doing so, but he's supposed to be back in a normal room hopefully tomorrow. Biopsy on the kidney failed again, but the one from the lung was successful. Preliminary results told us what we already knew - its cancer. But we have yet to hear back on what type of cancer cell it is, ie. renal, simple, etc. My stepmom said she's pretty sure they will just remove the kidney since the other one isn't involved with the cancer, and then determine what type of treatment they need for his lungs.

Another good sign is that he's most likely had this for a few years now before it was detected, so we're thinking it is probably not aggressive, but instead slow in its progression. That can mean a good deal of time left for my father, which is always a plus. My 13 year old is still going to go visit him as planned on the 26th for a month - step mom and dad both think that its best for him to get this visit in 'just in case'. God..that's such a horrifying thought. "Just in case".

[Warriorbird]

My Mom had two heart attacks over the week of last Thanksgiving. This sort of thing really opens your eyes.

[Beguiler]

Jolena,

My thoughts and prayers are with your father, you and your family. I can attest to the power of a positive mental attitude. It may seem almost impossible in the face of what you're all going through, but try to keep positive. As someone somewhere once said 'It ain't over until it's over!'

Blessings,


Syri's player

[Augie]

I'm so sorry to hear about what is going on with your dad. I'm glad to hear that his breathing is better from the surgery. I hope that everything works out for the best.

If you need to talk to just vent or anything, let me know. You can always call me.

[Skirmisher]

Best wishes to your father for his fullest recovery possible.

Try to not fall prey to the dire predictions of others or even your own making. The first four physicians who saw my mothers lap results and catscans held out little hope but she's still alive and kicking today. New techniques both in surgery and chemo come along every day.

You already said it so i'll echo the sentiment to stay positive and be a source of strength for him. If you do not live close in proximity to your father also consider contacting his house of worship if he is a religious individual as many have support groups set up to assist those members who are ill.

[Gan]

If I sound bitter, I am.

Monday there will be three chest tubes inserted into my father, who has always seemed to be invincible, no matter how irrational that is. My father, who has always been the pillar of strength and power to me. My father, who helped me raise my oldest son when I had noone else.

My father who is now lying in ICU on 3 liters of oxygen, and who can't hold a ten minute conversation with me without being out of breath and wheezing.

Firstly, I'm very sorry that you have to go through this with your father. There's no other words to describe the experience, it just sucks.

I quoted you above because what you wrote really gave me pause, because it describes exactly how I felt/feel when I lost my grandfather. He was my pillar of strength, he helped raise me after my folks divorced, and remained a stablizing influence on me through growing up with an unstable step-father.

Unbeknownst to everyone else in the family my grandfather was diagnosed with AML (Acute Myeolomic Leukemia), and having watched a close friend of his go through hell with chemo and then die anyways, he took it upon himself not to tell anyone for 18 months until it progressed to the point where I drug him to the ER one day when he almost passed out while working around the house. From that point in time he lived, going through experimental chemo here at MD Anderson, for 3 additional months of which the last 2 weeks were in a coma brought about by organ failure from being overwhelmed by the harsh chemo treatment and the Leukemia.

Standing 6'4" with shoulders as broad as a truck (Pennsylvania coal mining stock), he was the patriarch of the family and had the will and presence that proved it. Seeing him on the ICU bed with chest tubes, dozens of lines, and eventually being intubated was almost impossible for me to take. This was my rock, and he was dying. And it sucked.

Am I bitter? Hell yes. Still, even after 14 years. Bitter at Leukemia and mad as hell at him for not telling the rest of us what had hit him before he could no longer hide it. I can think of a thousand things I would have altered in order to spend more time with him, to do more things with him, to show him how much he really meant to me. I'm also very sad because he would never get to see his great grandson since he died 2 months after my wife and I married.

Looking back on the whole ordeal, we could tell through photos of him when he started shifting in appearance that was too gradual to notice face to face every day, but plainly evident when putting photos side by side over that time period.

This is probably more info about me than I like to hand out; however, I want you to know that I understand what you're going through and I wish you wouldnt have to go through it.

Just remember that he is and always will be your dad and your source of strength (your rock). No matter how he looks while he's in this fight.

[Jolena]

I think that quote you posted is the true problem that I'm faced with. He, too, is 6'4, large shoulders, powerful arms, big towering man of irish decent with a booming laugh that I can recall with such clarity that it is almost painful. It is so incredibly hard to deal with the thought of *anything* knocking him down. And yet, it has. At least to some extent.

Thankfully, he isn't trying to keep it from us, and I am so grateful for that as now I can do as much as possible to spend time with him, show him how very much I love him, and allow him to have a greater presence in my children's lives as well as James'. Its saddening how something like this is what it took to make me realize how precious time is, isn't it? Perhaps that is also part of what is so hard on me right now - the realization that I should have been doing these things before now, not just when it finally comes to the forefront of my mind that he's not invincible. Hindsight is always 20/20, they say.

Thank you for sharing your experience, Ganalon. Its easy to feel that perhaps you are alone in something like this, because it gets so damned overwhelming at times. I think that I've flip-flopped in emotions a hundred times since we found out. Emotions ranging from disbelief, anger, depression, a sense of incredible helplessness, and even hope. I don't expect it to end anytime soon, as this is going to be a long hard road for my family, but it helps to know that I'm not insane for experiencing such a roller coaster of thoughts and feelings right now.

That being said, my father is out of ICU and into PCU because they still have the tubes in him and on a machine to drain his lungs. However, he's much much more comfortable now and pathology came back tonight. We know its renal cancer, but the docs won't be in until tomorrow morning during rounds to explain if its aggressive, and the specific cell type. Hopefully, tomorrow I should know what route they plan to take, tentatively anyhow.

I keep picking up the phone to call him, and then setting it down. I don't know if I want to hear him in such pain. Awfully selfish of me, I know.

[Jolena]

Stage 4 renal clear cell carcinoma. Heh, there's only four stages, and he has stage 4.

Been doing a lot of research today through various medical magazines, journals, peer-reviewed information, that type of thing. Most of what I read is pretty bleak, but there is always the small 19% of people who are in the position that my father is in to consider. Those 19% of people had increased survival time, and a higher rate of progress-free survival. Thing is, noone is saying that he can have remission. All they are saying now is 'Here take this drug once a day for 4 weeks, then once a day for 2 weeks, and repeat as necessary. We hope that you will be in the 20% of cancer patients who can live longer with the help of this medicine, but we can't tell you that the cancer will go away. Just that we hope you can survive for a longer period of time." "What's that you ask? How long is extended survival due to the drug? Oh, yes well that is about 20 months. A small percentage can live for oh..five years or so, but most have their lives extended for 20 months. We think that's good!"

Fuck. That's not good, though. It really isn't. I realize I'm ranting, and sounding insanely irrational about all of this, but I can't help it. I don't want 'extended survival to 20 months'. I want 'remission with no more cancer'.

[Jolena]

So, I let myself have the hope that he would be okay, despite knowing that it wasn't probable. The doctors removed the tumor on the kidney and some on his heart, and told us that he had a really good chance of coming through this without too many complications. They didn't expect the tumors in his lungs to extend or even to grow and were starting treatments to shrink them.

He came home, and less than a week later was back in the hospital again. Tumors have over doubled, and just like that.. its done. He's dying. And now I'm planning the trip that will most likely be my last time seeing him alive. I don't even know how to prepare for this. I keep asking myself what I am going to say, because this is my chance to do so. Most people don't even get this much before their loved ones pass on. I guess I should be grateful that I have it.

[Beguiler]

Just tell him you love him, and always will. It will be exactly what he needs to hear, even though he knows it already.

You'll be in my prayers. Be safe.

[Hulkein]

I'm real sorry to hear about that Jolena. I missed this thread when it was first posted. I'm sorry the outcome wasn't better.

[Miss X]

I wouldn't worry about what you'll say, it will come out when you're there. Best wishes Jolena, I'm sure you will find strength to cope with things. :)

[Stunseed]

Jolena's not able to post this, so I figured I would.

Her father passed away at 2:59 CST, not in pain and with family surrounding him.

Thank you guys for giving her encouraging words.

[Amaron]

Give her a hug and my prayers.

Joleine/Katee and Landrai

[Ilvane]

Lots of love and hugs her way.:(

Angela

[Augie]

James, please pass along condolences from Steve and myself. We're very sorry to hear about her loss. There is only comfort in knowing that he is no longer suffering. Give her a big hug for us.

- Christina

[Snapp]

I'm sorry to hear that.. You two are both in my thoughts. :(

[Jolena]

Thanks for all the kind words everyone.