Norm the Nurse

Nice ring huh, well with all the frustration I have had thru this entire journey it may be a career option in the future. I mean with the countless times I seem to understand what is needed more than the people that are caring for Tami. Again, I dont downplay the countless people that have helped us along, but sometimes I just have to scratch my head at the things that are missed.

Tami just had a pain pump put in yesterday in addition to her internal one, the Hospice called me that morning asking me if we would rather try a fentanyl patch first. Dr Perdekamp decided it might be better to try that, I informed the nurse that if the Dr had been paying attention to Tami's care she might remember that Tami has had a reaction to those patches much like that which has caused death in others (shortness of breath, trouble breathing). The nurse said that the Dr probably just forgot, fair enough, I mean it happens right, you forget something at work, people die, no big whoop right?

The came out and put the pump on, they accessed her port, every time someone has accessed her port they have always flushed it to make sure it is working ok, The nurse did not this time, we started having problems with the pump almost immediately, I asked if she should have flushed the port, she said probably but she things she has it working and left. Of course it started messing up again, I had to have Hospice come out twice more to figure it out, once they tried a Sub Q in the back of her arm, which started to leak because Tami has not meat on her for the fluid to soak into, then the second time the Nurse got the port working properly and we have had no problems since.

I just get very frustrated with this, I am not the greatest worker on the planet, but damn if I wouldn't be ashamed if the customer coming into OSP had to tell me how to set up their file to print correctly when that is what I get paid to do.

It wasn't just these 2 instances above either, its been repeated ever since we started this journey. And I remember back to a nurse telling us that we needed to be responsible for Tami's care when she was in a hospital to make sure she is getting everything she needs, and that statement still blows my mind. Now no one is perfect and mistakes can happen, but it just frustrating to see it happen so often and in situations that could be very serious.

Life in a hospital

Beeps, chatter, sadness, crying, sleeping with your spouse, but she is in a bed and I am in a crappy recliner. The clock doesn't matter anymore, sleep comes between pain med doses and nurse visits. Keeping the curtains closed makes it easier to sleep when generally your not supposed to, and easier to be awake when you shouldn't be. Trying to absorb all the pain, the sadness, the anger the confusion, all the while trying to hold yours in, least to a healthy level anyways.

The food isn't bad, but then the ambiance kinda sucks. Most people are friendly, not everyone is. Knowing when to step on toes and knowing when to stroke egos. Trying to make sure the nurses hit the med schedules, and wondering how I can keep them straight in my head when they cant always and they have a computer to track them with.

The oncology floor adds a new dimension. The phone calls outside your door of people rallying their loved ones to come as someone only has hours to live, passing clergy as they leave a room. People crying in the halls in the middle of the night. Going to sleep with a neighbor, waking up to an empty room next door.

It is surreal to say the least, blogging, playing solitaire on my iPod, reading "The Coming of Conan the Cimmerian" by Robert E. Howard (I wasn't kidding about the geek thing in the title of this blog). Anything to stay a little sane in an insane situation. You get a sense of comfort with the staff at a hospital after a while, walking down the hall in the middle of the night in your socked feet to grab a drink or go to the bathroom. It's weird if you have never done it, I cant imagine it from Tami's point of view, I think I would feel trapped, imprisoned even.

As a side note, in the side bar to the right is a song by David Cook, he is the winner of last years American Idol, a year that actually produced something appealing. Anyways David Cook wrote this song for his brother who is battling brain cancer. It really speaks to me on a personal level. I am gonna try and post these songs when they come along, maybe they will speak to someone else that might not ever come across this type of music.

http://www.youtube.com/watch?v=vP80gxcLbZs&feature=related

The more we learn, the more we find out we don't know...

Tami is living this right now, so we could have told you this, but look at this study. After you read this, make sure that when you get a colonoscopy done, its done somewhere that knows what they are looking for, or at.

http://www.nytimes.com/2008/12/16/health/16cancer.html?_r=1

You may have read this on Tami's blog, but when she was first diagnosed she received a colonoscopy in the hospital. The doctor told us how good everything looked, and how what we know now as a fairly large tumor didn't look like much at all.

Some weeks later when this doctor tried collecting on his bill, Tami made sure to explain about how Mayo found a number of polyps and the tumor was quite large and most certainly cancer. Needless to say we never heard more from this doctor, or from anyone trying to collect on this bill.

So as an important note, not only is this test important to get done, its important to get it done in the right place.

R.I.P. Uncle Greg

I just found out today after returning home from yet another round of another new Chemo for Tami that my Uncle Greg passed away. He was diagnosed with Pancreatic Cancer just a short few months ago. Just like that, he is gone.

My Uncle Greg was probably one of the closest Uncles I had, he wasn't even truly an Uncle, but one of my Dad's close friends, but I always knew him as Uncle Greg. I grew up with his kids, Joanne and Brad, often staying at their house over night, or them staying at ours. He was just like my Dad in many ways, he was quite a character, and a drinker with my dad in their early years I would learn much later in life. I respected him like I did my dad, and missed them when they moved back to Manitoba with his job at Air Canada.

From there I didn't see them as much, and then as I moved out on my own, not at all. I got the random comical email from them, but not much more. Now he is gone. Tami never got to meet him, and I regret that, chalk up another of life's regrets.

Rest in peace Uncle Greg, and my condolences go out to Aunt Janet, Joanne, and Brad. I am thinking of all you.

So many paths...

It seems like we cant stay in one place too long, the we get stagnant and have to move along. I don't understand why, is it just us, do all cancer patients do this, I don't get it. Tami has been wanting to try other options for some time, all through this we have gotten told that Chemo is the way, nothing else at this time, maybe in the future something else. The future keeps coming and going and here we are, trying another Chemo and being told the more Chemos we do the less likely they will be effective.

So I am a logical thinker, and Tami is my perfect match and is an emotional thinker. I have to understand the problem, I have to understand the solution and when something is beyond my knowledge or skillset I defer to the "experts". As time gos along, and I start to understand the problem, my logical brain starts chewing on things. I look at Tami currently, and I think about her problem. She has Tumors in her liver, which were determined to be inoperable, she has a couple small spots in her omentum, these could be operable, as well there is other treatments for the omentum.

What will get her, out of the omentum "gut sack" and her liver, which do you think will get her if not addressed? Of course the liver will, now the current Chemo is supposed to be targeting both. Of course it is very debatable at how well it is doing, and more so how well this new chemo will do. There is a treatment call Y90, tiny radioactive beads flushed thru the liver (I am way over simplifying of course) that attack tumors in the liver, a proven performer (our current Oncologist has been involved in studies and papers with this treatment *shrug*). So my logical mind says, attack the liver, and treat the omentum afterwards. Ok, so there is a possibility the cancer in her omentum will rage out of control and all will be for not. But the problem with siting back is that it has only got us more cancer and any head way we have made is gone, again. 1 step forward, 2 steps back.

So here we are, headed into overtime. If we win, we get 2 points, if we lose end up with 1 point, and if we stay tied, both us and cancer get a point. I think its time to go on the offensive, play for the win, the tie gets us no where and a loss, well we are at risk of loss since August of last year.

I had a doctor tell me this today in an email when I asked about the possibility of doing Y90 treatment to the liver even though there was cancer in her omentum as well:

"Yes nearly all neuroendocrine patients have disease outside the liver but the liver is the critical organ that needs to be kept as tumor-free as possible."

I cant tell you you how nice it was to hear a doctor say what I have been thinking but held back because I wanted to believe we only needed to be with on doctor. Does this mean he is right and our doctor is wrong? Of course not, if I have learned anything thru all this is that there is so many different opinions and paths to take when treating this disease. There are more aggressive paths, there are safer paths, which path would you take? I cant answer this for Tami, I can tell you that she isn't one to lay down and take anything. Oh you might here her down and out, and she might sound ready to throw in the towel, but then when you start to turn away, she will sucker punch you and show you there is still a lot of fight left (this coming from one that has taken that sucker punch a few times, and I mean that not in a physical way.... well mostly :) ).

Y90, its being used on the liver currently in the US, in Europe they are using it as a systemic treatment. A treatment developed in the US, being used to its fullest outside the US, all I have to say on that is W.T.F.

This step father stuff is hard work....

I wouldn't ever say that I was scared about the prospect of becoming the step-father to 3 kids, I don't remember every hesitating on it at all. I don't know that I fully grasped the daunting task of being there for them, although I could claim the bar wasn't set very high for me by the person before me. That said, once I got into the mix, I probably made a lot of mistakes, with the boys especially.

13 years later, I got to walk Sarah down the aisle, I am tops on the Papa list, and I am still trying to figure all this out, I have come to the conclusion that I will still be learning how to do this till the end. Specially with what Tami has been going thru, I feel like I should be stepping up even more, but I am never really sure where and when, and that boat never stops to tell me before sailing on by. I know I have it in me, me and Sarah have never been closer, we talk like father and daughter, sometimes after hanging out with her I just shake my head because I can't believe, and would have never believed I could have built such a good relationship with her.

The boys continue to allude me, I know what I need to do, but its kinda like when you change jobs, or move to a new town, and you tell someone you will call. Then time passes, and you tell yourself you will call in a week, then it becomes a month, then a year, and so on. It just keeps getting harder to call as time goes. That is sorta where I am at now. The bad thing is they probably need me to be there more than every, and I just need to knuckle down and do it. But then I procrastinate. I'm good at that, ask Tami.

The longer I wait, the tougher it gets, the more factors that become involved. It's not just them anymore, it's their spouses and kids, its things going on with them aside from just what we have going on now. If there is one thing I am better at than procrastinating, it's digging myself a hole to climb out of.

Here I go, starting to climb...

Nerves of Rubber

I tell ya, I always claimed to be unaffected by stress, that I could distance myself enough from it that it would never affect me, but I have come to realize that I just never have been in a stressful situation till now. I am covering the gamut of emotions right now, fear, sadness, happiness, anger, you name it, I am living it. 

Lets see, Tami had her scan today, at this point she is well into this chemo and it is starting to take its toll, her counts are taking a beating and its emotionally draining on her to boot. Now she has a scan, which I get to give her the results on tomorrow. Depending on how it turns out it could change the course of her treatment. Of course this is nothing new, every scan seems to be so pivotal. But as time goes on, it just seems to be more so. Since we started going to Chicago, I get to be the first to see the reads, I get to give her the results, on one hand I wouldn't have it any other way, on the other hand I don't want to be the bearer of bad news either. I feel really good about this scan, I cant say why, but I do. I just hope my gut feelings are right for a change.

Coming up on Friday, I get to have an honor that I never thought I would get to have. I get to walk my step-daughter down the aisle as she gets married. I cant put into words how honored and touched I am that she is letting me be part of this, even when I met her for the first time and we seemed to hit it off so well, I never imagined that I would be so close to her that she would allow me to do this. I am very proud of her, how she has handled herself thru everything. I am actually kinda getting nervous about it now, I mean I had a fumble during my own marriage (with my wawfully wedded wife :) ) I hope don't mess up this time. or worse, cry down the aisle like Tami thinks I am going to. :P

The economy sucks right now, and looking at how slow things are right now. Work is bracing for the worst of it, and it makes for some tough times. Top that all off with everything else going on and you have a wonderful stress sundae. I love my job and what I do, but times like this make it tough, I know I just have to push thru and things will work out. 

Its been super having my parents down here, and I can almost breath a little easier during the day knowing they are at home with Tami. Its going to suck saying goodbye to them on Sunday morning as it always is, and I know it will be 100 times worse for Tami cuz I know having someone there with her is a huge help.

All I can do now is try to be a better husband/step-father/person each day. Try and manage my stress levels so that I can take care of what is important. Somedays its tough, but luckily I have such a great example of strength in Tami to look up to, I just hope somedays she is proud of me as I am of her everyday.