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.

High on Protein

Ok, I been slacking long enough, so the hunt begins for some yummy high protein dishes that a simple man like me can cook (I can make three things really good, one of which is toasted balogna sandwiches). Tami has had to be on a high protein diet for most of her journey, she has been supplementing thru tuna lunch kits, yogurt and cottage cheese. I have found a couple good websites with some good sounding recipes but if any of you (and I hope some of you visit from Tami's site see this) please post some recipes for me, or email them to me at loewen@mchsi.com.

Thanks to Mike B here at work for the suggestion of thin strips of raw steak dipped in a mustard sauce, while its an easy recipe I don't think I could talk Tami into that one, heck it even made me throw up a little in my mouth. :P

Non Specific Ramblings....

So my head is a swimming whirl pool of emotions today, nothing specific yet all related. Emotions these days are hard to comprehend. I feel guilt when I laugh at work, I can't muster a tear when I should be breaking down, my eyes well up when I least expect it. My youthful temper seems to be simmering waiting for the wrong time to rear its ugly head. Not knowing if I am displaying the right emotion at the right time, wondering why I have to think about what emotion I am showing at any given time and analyze if its the correct one.

I was watching Bridge to Terabithia last night, mostly a pre-screen to see if its a movie we could watch with Mckalya the first opportunity we get to have a movie night with her. And its a decent kids movie, not too scary, but the subject gets a little deep in the end, and I wont spoil the end for anyone, but it had me breaking down, and I don't know if it was the movie itself or just bad timing emotionally.

Then the guilt sets in, I scold myself for letting myself let go, I scold myself for feeling like that or anything else, which makes no sense, because I have to feel like something, but these days I am not 100% sure what I should be at any given moment. It feels wrong to be happy, feels selfish to be sad, feels unforgivable to be angry. Tami, as great as she is has always said that I can feel and show her anything I am feeling at anytime, but even now I feel selfish for sharing any thing I feel. Everyone tells me this is just silly, heck I know its silly, yet I still try and shield everyone which just tends to backfire or make things worse in the long run. I am really just scared, cornered, confused, falling down a black hole not knowing when I am gonna splatter on the bottom.

I snap at people I shouldn't snap at (including Tami). Its getting harder to watch any movie or TV program anymore (the theme is either cancer, sickness or death - really get a pad and pencil and mark every time even just cancer is mentioned, let alone sickness or death). Heck, even at work I have heard the term cancer used to describe other things, I hate that word so much now. I don't know the right things to say, it seems like I just say the same things over and over and everyone is starting to doubt it. Tami gave me an email of this guy that is going thru the same situation, but to be honest I am almost scared to talk to him now, that it will make it even more real, or it will show I am not doing good enough or whatever. Part of me still wants to sit in denial, and not admit that Tami is going thru the same things as these other people, that she will be just fine and we can get back to her yelling at me for not picking up my towels, or cleaning up my computer desk. I know its not the case, but my mind cant wrap itself around the concept at times.

The 1 year anniversary is coming up, and it seems all to fast to be just a year, and all to slow to only be just a year. All Tami has been thru, how proud of her I am to have battled this far and gone thru so much. She says I take the brunt of her emotions some days, and maybe I do, but it's all I can take away from her, I cant take her cancer, I would if I could, I cant ease her fears, I cant make her pain less or take the illness that the chemo gives her away. I know of the worst days, the brunt of her emotions doesn't even begin to equal what she deals with day to day.

The title of this post shouldn't disappoint, it is non specific ramblings, but this is how my head gets somedays, like I cant think straight cuz I have so much being run thru it. It doesn't feel like anyone could understand and at the same time feels like I should just knock the shit off and take care of what I need to take care of. So I am taking my lunch break today to unload my mind thru type and see if that helps any, I doubt it, but it can't hurt.

Points of light

Ok, so my last post was a little down, and, well, as far as Mayo is concerned it always will be. I do believe that there are points of light, rays of goodness in everything. Now it was mentioned that perhaps I expected too much out of people in the cancer field, and I will admit going into this I expected us to be farther along in the fight against Cancer than we actually are. That is not to say we don't have some very strong options and ways to combat it, but other things just seem slow on development. Anyways, back on topic, I will touch on the the other point later or in another post.

Points of light, Dr Al Benson, Through everything we have gone through and all the doctors we have seen, Dr Benson has been the template for how doctors should be, in my opinion. I remember the day we first saw him, I had talked to him on the phone and thru email a few times already, on the phone it was like talking to someone that was really into computers about computers, they would ramble on about this and that like you knew exactly what they were saying. He seemed interested, if that makes any sense. He was offering things I had never heard about from anyone. I wish at the time I talked to him I would have asked him further on his opinion of Tami's upcoming surgery. Water under the bridge right? Anyways, the day we met him, he was running late, Tami was about to walk, lock Tami in a small room with no windows and no smoking and see how long you last... I dare ya! I finally went out and asked what was going on, he was running behind and would be with us shortly, I thought to myself, typical. In my defense I was, and am still very jaded when it comes to the discussion of doctors and the level of caring and concern for their patients.

Dr Benson finally comes into the room, the first thing that catches my eye is the button he is wearing on his jacket (it caught Tami's eye as well) It had the word pain with a circle around it and a line thru the word. He was very soft spoken, calming even. I don't know how to describe someone, but there is just an initial impression you get about someone, and with me personally, I usually get a good idea of a person within the first few minutes of conversing with them. He seemed very knowledgeable about what was going on, he seemed to know what he was talking about, like he really had made an effort to get to know Tami's case, like he was almost excited for the opportunity to be the one to help us. He answered question how I thought they should be answered. Tami: How long and well will I be able to tolerate this Chemo? Dr Benson: We cant really say, some handle things better than others, we will closely monitor you to make sure you are doing ok with the Chemo. Tami: How long will this Chemo give me, what are my chances? Dr Benson: Everyone responds differently to Chemo, we will monitor you to see how you respond and will get a better idea of what and where we need to go and do as we go along. Now these are not direct quotes but you get the idea, he answered like a human doctor, someone that wasn't interested in stats, or text book answers. He was educated enough and respectful enough to say that he didn't know everything. He was optimistic, but realistic at the same time. He was more interested in treating Tami for what she had going on currently than for what might or might not happen in a few months, his concern for her comfort thru pain control and tolerance of the Chemo was so comforting, half way thru the first meeting I knew that no matter what, we would be coming up to Chicago to do the Chemo. So far I have not been disappointed.

Now dont get me wrong, I dont think that Dr Benson can do miracles or magic. I do think that Dr Benson cares about Tami. Something I have not felt since this journey began, from the doctors at Mayo that seemed resigned to the fact that Tami's fate was sealed and they held the play book, to Dr Gomez who thought it was important to let Tami know his prognosis (or guesstimate as I prefer to term it) of Tami's life, or Dr Migas, who was so all over the board most of the time, my head hurt and made me a little dizzy after most meetings with him, I am not ever sure he knew what he had said the week before.

So with a Doctor like Dr Benson, and his staff, like Vicki and the others, there are people in the Cancer Biz that know what they are up against, know what their patients are up against, understand and feel for them, and try and make good out of a dismal and horrible experience.

Today Tami received her results from her CT, well I went and picked them up and got to inform her, lucky me, I was a nervous wreck driving down to get them, I am tired of seeing my wife cry, delivering bad news or sharing in that with her. But today I got to tell her this Chemo is working, that reduction of the tumors in her liver was shown, and that in this battle in the war on cancer we had the upper hand. Finally some good news. I cant tell you in words here or in person how proud I am of Tami, I dont know that I could be as strong as she has been through all of this, at times more worried about me or others in the family than herself. I am not sure how I got so lucky, to have a wife like her, that puts up with all my short comings and makes me a better person in turn. I ask everyone that knows her, that sees her, that talks to her, realize and understand what she is up against, what she has done so far, how well she is fighting and tell her every day you see her how proud you are of her, because she needs to know above all else, no matter what happens in the future, she has already done more and fought harder than anyone could have every asked her to. A day shouldn't go by without her being told that, I look up to her, so should everyone.

Cancer: Big Business

Ok, so I thought that maybe a blog of my own would help me vent things going on in my head, and not monopolize Tami's Blog, not that I wont keep helping her update, but my feelings can tend to be a little "stronger" and I tend to get a little angry about things I see as we have been going thru this journey. So to start of I want to give everyone some food for thought. Is the cure for Cancer a high priority for the people currently in the field treating people like Tami? I compare it to the Oil industry, the fact that oil and what we use it for, all the different things and how important it is to us, and how Oil companies can make such huge profits off of it. The fact that it only makes sense to find an alternate fuel source and that there is enough brilliant people out there, that with the proper funding could surely come up with something better. I mean NASA researches fuel sources for long journeys in space, certainly some of the stuff they have stumbled across might not get me to the next galaxy, but could probably propel my car to the corner store. You hear about all tis stuff in development and even when they do release something a little better, its priced so high us normal people couldn't afford it anyways.

Ok so money keeps oil alive, so what stops us from curing cancer. Is it that elusive? Or do we focus on treatment and not cures. I will use Mayo as my example, I am sure that they have done wonderful things for a good many people. So people may or may not agree with the things I am about to say.

The first thing you notice when you walk into Mayo is the building, what an incredible building, beautiful landscaping and architecture. Surely millions of dollars, possible donated, possible raised, I dunno, I am sure I could research how they afforded such an incredible building. Anyways, walking thru the Gonda Building I find myself wondering is all this needed. who is this impressing? I wonder how this aids and comforts a person facing a battle against Cancer? Dont get me wrong ok, I mean in the treatment and care you want a person to be comfortable and be in a positive environment, but really, look at this picture, would anyone have preferred a simpler design and the extra money put into research? Do a search for "gonda mayo" to see more images.

Again, I am sure I could go hunt for facts and figures and I am sure Mayo puts major cash into research. But then I am reminded about my visit to them. Lets paint the scene, Tami has Cancer, who do we go to? Duh, Mayo, they are the best right? They will give Tami the best care possible. I have good insurance, Mayo accepts that, we are in good hands. Tami went up with her sisters before me, I had spent my vacation on the previous stay in the hospital, if you don't know the story, just look at the early posts on Tami's blog. So before I even get there, they are already telling her stuff they don't know, how long she might live, how long they can give her with this and that. They, Mayo, all mighty Mayo, doesn't even know what kind of Cancer for sure. They aren't positive on a course of Chemo, they make an educated guess. They do limited testing, no more than we got in Bloomington. I ask about a PET Scan, no we know how bad it is, the PET scan wouldn't do us any good. No biopsies of the Liver, they could do a CT/Biopsy, but no, they already know everything they need to know, well except what type of cancer for sure, and how extensive, oh and how to treat it for sure.

Now at this time, we still hold Mayo in high regard, I mean its still Mayo the almighty, and if they tell me this is it, then I bought it, because they have a big shiny building, and all the best toys. Looking back now, from what we know, we have to ask, why no OctreoScan? I mean one of the possibilities was that it was a neuroendocrine type tumor, what is this scan for? Neuroendocrine type tumors. How much time and pain would we have saved had they done this? Prognosis, Tami asked Dr. Benson how long she might have, or how long she could go on Chemo or how long whatever. What did Dr. Benson say? He doesn't know, why? Because he is a human being, he is a Doctor, he isn't god, or a fortune teller, he cant predict how Tami will respond to the drugs, how things will go. Sure, he could have given us guesses, odds, statistics. But he didn't. Mayo, Dr Bible, Dr Gomez here in Bloomington, they all felt like they could see the future, draw a road map for Tami's life. Truth is they cant, and they are so very wrong for trying to do so. I was devastated when I left Mayo, I thought there was a good chance I could be alone Christmas, that I could lose my wife so soon. Someone might say, hey, she made it longer than they said, be happy. I say they shouldn't have been guessing or predicting, they are Doctors, speak of what you know, respect what you dont.

Ok, so have I gotten off track with my Mayo rant, no. Let me tie it together. Half assed (in my opinion) efforts on the part of people like the Doctors we dealt with at Mayo and here in Bloomington make me wonder if they are more concerned about collecting their huge sums of cash for Chemo treatments (Tami's first was right about $25,000). If someone cured Cancer, what would that shiny building be for? The drug companies, all the cancer centers, all the people working in the field, what would they do. Don't get me wrong either, there are a lot of caring people in the cancer treatment field, honest hard working people. Dr Benson and his staff have been incredible so far, but as you go up the ladder, like the oil companies, you have to wonder, are they trying that hard to put themselves out of work?