Updates

Hi everyone. I'm back from the cabin a little bit early so I thought I'd put out some updates.

1. Jim is doing okay, but his health has deteriorated over the week. His sister has been working on getting more calories into him, but at present he's not getting enough calories to sustain his current weight. She got him some Carnation Very High Calorie drinks, so hopefully those will help him get his weight up a little bit.
2. Yesterday, they brought Jim over to the Vince to have him checked out, and they suspected that he was dehydrated. So they gave him some fluids intravenously.
3. They also did some bloodwork on him and found that his hemoglobin was low. A normal hemoglobin level is around 12. People need a transfusion at around 8. Jim was at 8.1, so they decided that he could benefit from a transfusion. So when they called me, I thought I should come home to support Jim during the transfusion. Jim has been dreading a transfusion. He's just had it in his mind that he didn't want one. But by the time I got to the hospital last night, he was looking a lot better. (And they put him on the second floor where the nurses are the best in the world, so who can complain!?)
4. Jim's belly is very distended and uncomfortable. It's hard for him to fit anything into his digestive system, including the shakes, because his abdomen is so inflamed. We are hoping that the radiation microspheres can help with that, but he's going to have to tough it out for two more weeks.
5. They changed our schedule at Northwestern. Jim was supposed to have his scan yesterday morning and his angiogram/trial run for the microspheres on Monday. But they switched his appointments so that he has his scan on Monday morning and the angiogram/trial on Tuesday. So we'll leave tomorrow afternoon for Chicago. We still don't know the date of the actual procedure, although we suspect it will be around Friday, August 10th. They will know more after they do the angiogram. The reason they don't know the actual date is because they have to order the radiation microspheres. I'm guessing they'll determine the volume they'll need to order based on the results of the angiogram.
6. The cabin was great. I was sad to leave. But you know, a girl can only take so much soft-serve ice cream and sleep before she longs to pick up the cancer fight again. My parents coddled me like only a mom and dad can do. They cared for my kids. My friends Wendy and Lisa sent flowers, and they got me a pedicure and massage. I went for a couple of boat rides, drank a little wine, ate lots of ice cream, sat out on the dock, and talked to my parents about my fears. Although Jim and I have had some of the hard talks, it's just easier to talk to my parents about some things. I've always been best friend with my folks - talking to them is just a natural for me. And I can talk to them without the same kind of heartache I feel when I talk to Jim about my fears.

Although it seems that things are falling apart, I think things are getting better. Maybe that's the kind of relief a week away brings. By getting the hemoglobin and the IV fluids, I believe Jim's body will be better able to absorb his pain medication. (This based on my advanced medical degree that I've earned since September.) If he's in less pain, he'll be able to consume more calories. More calories will lead to strength. Strength will enable him to respond to treatment and repair his body after treatment.

I've started going back to the American Cancer Society web boards because there are so many Stage IV survivors there. They are a real inspiration. People have prevailed over the same kind of disease that Jim has. I believe that he can. That we can.

Let go and let God

Whenever I hear the phrase "Let go and let God" I always think "what does that mean?" Well, I figured it out today.

While Janet and Jim Sr. were here, Janet said to me a few times "I don't know how you do it all". Well, I'm not doing it all. While they were here Janet ironed more than 50 pieces of clothes for us. That was the first time ironing had been done since my mother ironed the last batch of around 50. There are some things I have just had to let go of - ironing being one of them.

Today I realized that I am in desperate need of a break. We are having a tough time keeping Jim healthy. I'm having a tough time managing the kids and the dogs and the house and the medical scenario. It's hard to see Jim like this. Jim and I have gone through some seriously chubby times in our lives. Seeing him this thin is unnatural.

I finally had a meltdown today and couldn't recover. (I knew I'd eventually betray my strong facade. I turned into a crying gelatinous blob, just like I'd suspected I might.) I told Jim that I needed a break. So we called his sister and she agreed to come out and care for Jim this week while I go to my parents' cabin with the kids. I'll stay there until Sunday and then go down to be with Jim for the testing day at Northwestern. Jim's sister and her husband are going to take care of Jim, the house, and the medical scenario for the week.

I feel horrible guilt for taking a break. I feel like I'm not living up to my marriage vows. I feel like I'm deserting him. I am worried that something will happen while I'm gone. I'm worried that they'll forget to pick up his Fragmin at the drugstore. (I know Judi won't, but I'm not very rational when I'm a crying mess.) I'm worried he'll need me and I won't be here.

I feel terrible that I'm in need of such help right after Janet and Jim left. Right after my Mom left after taking care of the kids while we were at Northwestern. But when I think about it, I realize that while Jim Sr. and Janet were here, we were splitting my job among three people. Janet cared for the kids, Jim Sr. cared for the house, and I took care of Jim and did the medical stuff. And medical stuff takes some time - it sounds silly, but pharmacy runs, phone calls, appointment setting, research (I like to go into his doctor's appointments with a list of questions and be somewhat educated on the topic at hand), and talking to the insurance company all add up. It's hard to have a real phone call when the kids are screaming and ripping things apart.

This week I found out that a friend of mine committed suicide. She had a two boys, ages 3 and 18 months. I keep thinking about my friend. I know she had some pretty serious postpartum depression. My heart has been sitting in my throat since I heard the news. I think it's because of her that I finally asked for some help. I can't let myself slide any further. The kids need me to be strong, and so does Jim. I can't rally 100% any more. I can only rally to about 80%, and that's not good, because Jim can only rally to around 60%. We need better odds that that.

I'm scared that taking this break won't be enough. Or it won't fix it. But I'm also scared to stay here. I haven't had a single day where I haven't ended up yelling at Rachel in sheer frustration. I'm so warped that I've been wondering if Jake is banging on the screen door and pushing it out to tick me off. And I spend about 10% of my day fearfully checking on Jim. I stand at the bedroom door repeatedly throughout the day and make sure he's breathing. He's so thin and skeletal that it scares me.

I've been asking for more help lately. My friends Amy and Susan came over one night and organized all the paperwork on the dining room table for me. If you'd seen my dining room table...it was enough to scare a pack rat. They even organized all the medical records chronologically. Amazing. But while we were doing that I could feel my heart rising to my throat. How did I get to be this prideful? Why is asking for help so painful? Lately it seems that people offer help and I just start to cry. I don't know what to ask for. I don't want to inconvenience our friends and loved ones. And I know in my heart that I cannot ever return the favor.

My heart is still sitting in my throat but I'm hoping that will get better. I'm hoping that we can use this time to get Jim healthy and rally our spirits back to 100%. I think Jim presents better when other people are around. If his sister pushes him to drink more shakes, if she asks him to walk, if she tries to get him to eat, I think he'll be more willing to do it. It's easy to fall into a slump when it's just your family around. Sort of like the fact that I'm willing to wear my sweats at home, but I would never, ever, ever go out in public wearing anything that resembles sweatpants. Because, you know, jeans and flip-flops are so much more presentable. Hee hee.

Today I decided to open the floodgates and just let go and ask for help. It's not that I didn't let God in before...but it was sort of like Driver's Ed. I always had my foot on that brake extension in case things were getting out of control. This is me letting go and letting God take the reigns. Totally. In my life. In our house. In our medical journey. I need help. From God and from our friends. I need God to guide me on asking for help, and to give me the grace to recover this week and become a better wife and mother.

I don't know if I'll be blogging this week from my parents' house. Maybe I even need a break from the blog, although it's something I truly enjoy doing. Please pray for us. For Jim's healing, for my mental well-being, and for our kids, who are caught in the torrent but don't really understand what's going on. We need a miracle. We need healing on all sorts of levels.

Microspheres and Retirement

We had a successful visit at Northwestern. We met with Dr. Mulcahy, who was very direct (almost as much as Dr. Kemeny, but Kemeny is unbeatable), and who was very competent. She looked everything over, but she'd already had an entire team set up to meet us. We spent 2 hours in consult with her and her team today. I've never heard of seeing any doctor for two hours.

So, she basically said that yes, he's eligible for radiation microspheres. We're going to do a trial that enables Northwestern to use a microsphere that they believe to be the most successful. Apparently there's more than one type of microsphere. One is encased in glass, the other in a resin. When I say encased...each microsphere is 1/3 the diameter of a piece of hair, so it's not the casing they are worried about - they just use that as a distinguishing factor when explaining it to laypeople like us. So we are excited about that - it's nice that they have a choice on what to use.

We met with the Interventional Radiologist today. He looked young (in his 30s?!) but he seemed very relaxed and competent, which was good. (Not so for some of the young doctors we met at Mayo, so this was a refreshing change.) Northwestern considers themselves the leaders in radiation microspheres. I'm not sure if there's tons of data to back that up, but I liked the way they handled things. I liked meeting the Interventional Radiologist right at the beginning. And Dr. Mulcahy was clearly on top of things.

Dr. Mulcahy did manage to "tick Jim off" (thanks, Shauna!) by telling him that he'd never get rid of his cancer. (I was having a hard time explaining the word exchange with Dr. Mulcahy and my friend Shauna said it most succinctly - "So she ticked him off!") He's determined to take better care of himself, build up his strength, and put up a full-fledged kicking and screaming fight. And then we may have to do a giant conga line where we go to each doctor that told us he couldn't do it and throw bananas at them. Or something like that. I haven't thought that out completely yet.

Anyway, she was still very positive and basically said that the goal is to stabilize him. That's our goal too, so everyone's on the same page.

Next up: we go back for a scan on Friday. Then the following Monday is a big day - he gets an angiogram (An x-ray of blood vessels; the person receives an injection of dye to outline the vessels on the x-ray) on his liver. Then they actually do a trial run to see where the radiation microspheres will go in the body. They don't want random microspheres floating around, getting out of the liver, and ending up in the heart or lungs or anything like that. They said it's pretty rare but I'm glad they check.

Then, he comes home and waits until the Friday of the NEXT week, because they have to order the microspheres. Since it's radiation, it degrades the longer they let it sit around. Who knew?! So they need to order it and then get him in there to do the procedure while the microspheres are still "fresh".

Let's see...what else am I missing?

On a totally different note: Retirement, here we come.

My Uncle Tom and Aunt Tina lent us their apartment in Chicago. It's their retirement place - they'll have this one in Chicago and one near their daughter and son-in-law in South Carolina. Anyway, it was the coolest place ever. As you know, my childhood dream was to own a loft in NYC. WELL, THIS IS THAT PLACE, except in Chicago. The moment we stepped in the door, our entire retirement took shape for me. Winters in Arizona, summers in Chicago, living in a cool loft. Jim got kind of smirky and said "I knew you'd be talking about this". Because of course, now that I have the vision I can't let it go. Pretty soon I'll start badgering him "Don't you think we should get a place now? That way we can have it all ready when we retire in 25 years..."

Jim's got a tall order. First, get the radiation microspheres to get rid of the cancer in his liver. Then, do systemic chemo to get rid of the ones on his omentum. Then get the hepatic pump so we can keep him cancer-free. Then design a lot of boxes and save his customers lots of money so that he can buy me a loft in Chicago. Then we'll get the place in Arizona. Then we can retire and jet set between our-not-yet-chosen-city-in-Arizona and Chicago. Sounds like a plan, doesn't it?

Lance Armstrong, blah blah blah

The two things that are most talked about by well meaning friends/loved ones/strangers are:
1. Homemade "cures" that worked for someones mother's brother's sister's friend, and
2. Lance Armstrong.

Don't get me wrong, Lance is awesome. But there comes a point in the cancer journey when so many people have said "Well look at Lance Armstrong" that you start thinking "ENOUGH ABOUT LANCE!" In truth, I'm guilty of holding Lance up as the cancer icon. We know he's the poster boy for advanced stage cancer. And there's most certainly a reason for that. The problem is that Lance is about the only poster boy that people have to hold up. And man, did he beat it. I read his book - it was great. That's one guy who was willing to do anything. Anything. And he did.

So here's the thing. Lance is the Advanced Stage Cancer Poster Boy (we'll acronymize (ooh, I'm going to get in trouble for making up my own words!) that long phrase to ASCPB) for several reasons, but after he's mentioned enough, you also get a little bitter and start thinking "Well Lance had all the money in the world to do treatments". True. BUT there are a lot of people who have all the money in the world, and they still don't make it. Case in point, Katie Couric's husband. Another ASCPB, but for different reasons.

It boils down to the fact that there are two reasons people survive cancer.
1. Their body responds to treatment.
2. They have the will to live.

Without the combination of BOTH those things, there's no making it through. For those of you that are about to get excited and say "Diet. Prayer. Faith. Exercise." I say yes, those fall under the category "The Will To Live". Either you're willing to make exceptional effort, or you're not. And it's okay for those that aren't. Either your body responds, or it doesn't. The scary thing, for us included, is that some people have the will to live but their body doesn't respond.

Lance Armstrong is a great ASCPB, but let's face it, he had the will to live, and his body responded to basically the first treatment they gave him. I'd love to see a ASCPB who's been down on the fritz, who has failed traditional treatment, but STILL manages to make it back. It happens all the time - the thing is, we don't see them because they don't win the Tour de France after beating cancer. Our personal ASCPB, our friend George, did that very thing (not winning the Tour de France...) he beat advanced cancer after traditional treatment failed him. HE BEAT IT. And you know what? He had the will to live. I've never seen anyone with a stronger faith. And he just kept going until he found something that worked.

This long blog is prompted by an exciting call I had with Dr. Kemeny's office today. I spoke with her clinical trial coordinator. Dr. Kemeny looked at the scan and confirmed that it's mostly in his liver, but there are some "tiny" spots outside his liver in his abdominal wall. She used the word tiny. So the message through the clinical trial coordinator was "Do the radiation microspheres, then do systemic chemo, and then do the hepatic pump".

The thing that was so exciting was what the clinical trial coordinator told me outside the actual logistics of Jim's treatment. She told me that the hepatic pump is AMAZING. She said that the drug that they administer through the hepatic pump goes crazy on liver tumors. She said that during testing, they were having trouble finding a drug that was ultra-effective through the pump, and they had this older drug just sort of laying around, so they thought "why not"? Well, the older drug was hugely successful. She told me that she's seen lots of patients whose doctor at home told them they had a few months left to live, the people found Dr. Kemeny, and lo and behold, she turned them around using the hepatic pump.

She also said "Kate, no one comes to Dr. Kemeny with early stage cancer. Almost her entire patient roster consists of people with way advanced cancer. The reason you have to wait so long in the waiting room? It's because she's keeping all these people alive. Her client roster keeps growing and growing because few of her patients don't make it." Oh boy. Never again will I complain about time spent waiting for Dr. Kemeny. I'll wait for days if she works some of that magic on Jim.

We're not going to hold Dr. Kemeny to every point of that phone conversation, but it sure would be nice if Jim was one of her success stories. Then we can make Jim a real life ASCPB. It would be really great if we could hold Jim's picture up next to Lance's and people would say "Well, enough about Lance. Did you hear about that Jim Marventano guy?"

P.S. Blog Antagonist - good question about whether or not we can do a liver transplant. That was the first question I asked when he was diagnosed. Cancer patients are typically not candidates for liver transplant because cancer can lurk elsewhere in the body. So theoretically, they could transplant and he could just have cancer all over again. Also, Jim is absolutely not a candidate because he has obvious cancer on his abdominal wall. If our new course of treatment works, Jim will possibly be eligible for a liver resection, which means they remove the half (or up to 80%) of the liver that still has disease. Only if we get rid of the cancer outside his liver. And here's something amazing - because the liver regenerates itself, he can have a resection on say, the left lobe, and then later have a resection on the right lobe. How crazy is that?

FINALLY

We finally got some "good" news today. Most of the cancer is concentrated immediately around Jim's liver. It's pretty sad when that's the "good" news, but hey, we'll take what we can get.

SO, Dr. Haid, our cancer boon and guru, went over the PET scan with us today. We are very excited that most of the concentration is around the liver, because as per Dr. Kemeny's plan, we will now proceed to treat Jim's liver directly. She gave us two choices - treating the liver directly with chemotherapy, or doing the radiation microspheres. Since the microspheres aren't available at Sloan Kettering, our next choice is someplace close to home. Although treating the liver directly with chemo (called hepatic arterial infusion) is the more prevalent of the two choices, we've done chemo (albeit systemic)...and without much luck. So we're choosing to try the radiation microspheres first. We haven't done them, and we're hoping that our lucky number comes up with these little suckers.

We'd thought of going to Madison, but I started wondering last night if we wouldn't have more success in the Chicago area. After all, it's a larger concentration of people (read: a larger concentration of cancer), let alone those that travel there for treatment. So I found out that they do the radiation microspheres at Northwestern and University of Illinois, Chicago. Yee haw.

After we confirmed all the liver information with Dr. Haid, I expressed my concerns about going to Madison for the microspheres. Dr. Haid told us that he wasn't too impressed with Madison. Suddenly the list is down to two. Then Dr. Haid says "Well, I was at Northwestern for 25 years, and Dr. Al Benson is a friend of mine. Let's call him now." So, Dr. Haid made the call. Well, Al Benson is out of the office until the 25th. So they tried to give Dr. Haid the fellow's information. Dr. Haid told them that working with a fellow is completely unacceptable, it would have to be his replacement. SO we got set up with Dr. Mulcahy in the meantime. We're seeing her this Friday. At 10:00 am. Heaven sent.

We still have to call Dr. Kemeny's office tomorrow. We still need to investigate the trial at St. Luke's down in Milwaukee. And we still need to consider if we want to do the trial through Dr. Kemeny, do the trial in Milwaukee, or do traditional chemo in addition to the radiation microspheres.

We are excited. It seems that a path is forming with new possibilities. We're making a good choice by asking Dr. Haid to coordinate Jim's care. We're doing the right thing by sticking with Dr. Kemeny. And now it seems that we're being pointed in the right direction by going to Northwestern.

We need your continued prayers. Thanks, also, to those of you who have let me know you've heard Lola. I believe we are getting signs that we should press on. He might not be cured this week. He might not be cured next week. But what if he could be cured soon? That's what we're hoping for. We are painfully aware of where we are in this process, but new treatments and new directions give us hope.

Oh, now this is funny

Linda Carter Galbato, Janet's cousin, sent me this cartoon this week. It made me laugh out loud, given the Emotional Triggers post. Thanks, Linda!

This stinks like a giant yellow lab...or two

Okay, I'm sick of writing mournful stuff. We all know he has cancer. Let's talk about something else for 10 minutes of our lives. Forgive me any spelling errors, I'm on my second glass of Fume Blanc. And boy is it good.
I'm going to set the record straight, once and for all, about the dogs. They smell. No, no, no. What I mean to say is...they smell. But they are the best dogs anyone could ever ask for. We got Palmer while we were living in Charlotte. He was a completely overwhelming puppy. We got Major (who was from the same litter...more on that later) a year later when we moved to Atlanta. Palmer is Jim's dog, Major is mine.

Categorically, Palmer is the smart one. Palmer knows all his commands. He is a blond beauty that probably would have made a great show/stud dog. Even as a very young puppy, the breeder warned us that he was going to be a handful. She was right. But boy is he pretty. It's a good thing because it makes up for the fact that on occasion, Palmer decides (and I mean that literally) to be naughty. For example, if we mistakenly leave the gate open in the yard, Palmer is the first one out. He knows he shouldn't, but he decides whether or not he will. Major is a follower. Sometimes he follows Palmer, and sometimes he tattles by sitting on the back porch and howling. Typically if I find that if Palmer has gotten out of the yard, he's not more than a block away.

Major, on the other hand, is our sweet lovable dummy. Oh, he loves to be loved. He's the smellier of the two. He's got breath that could kill a small goat. And the gas. It's unspeakable. And in this house, unspeakable gas is a rarity. See Too Much Information. Major went to a Guide Dog school straight from the litter, but he was so stupid he got kicked out. Literally. So we got him for half price. Literally. Major tempers Palmer. Palmer is high strung. Major (except when you pet him) is cool as a cucumber. Probably because he has no idea what's going on around him.

And although Major is our dumb one, he can be smart in some ways. Major cares about two things: getting lots of petting, and food. Jim built the dogs a beautiful feeding station. One bowl for each dog, with the food stored inside. It's worked out well. But we were stunned to find the top pushed open one day, with about half the food eaten. Major was bloated and happy, practically still laying on the feeding station when we discovered him. At first we thought it was our mistake - one of us had left the top open a little after feeding them. Oh no. We finally caught him pushing the top open with his snout. So then Jim put a plastic latch on the back of the feeding station to hold it closed. We used that successfully for quite a while. Then we caught Major again, stuffed to the gills. Hm. Once again, we blamed ourselves. Oh no. He'd figured out how to open the latch. NOW, we have the latch and a pin (a screw that we can easily pull out) in the top of the feeding station. Unless Major grows opposable thumbs, I doubt he'll be able to open it. Right?

Most people don't know that we have dogs. For three reasons.
1. Whenever people come over, I put the dogs in the basement. I am hyperaware that not everyone likes dogs. And therefore I refuse to inflict dogs on people that may or may not love dogs.
2. We never walk the dogs anymore. They get to play in our backyard, and sometimes I take them to the park and throw the ball to them.
3. Our dogs are not barkers. They bark if they really need to, but otherwise, pretty much keep quiet.

Before Rachel and Jake's arrival, Palmer and Major were our kids. In fact, we got Palmer and Major because I wasn't sure that I wanted kids. Palmer and Major really had the life when we moved to Atlanta. We took them to the park every single day and threw them a ball until they were so exhausted they could barely make it home. Slowly, slowly, Palmer and Major have been relegated to dog status in our house. I often feel guilt about not walking them like we used to. I felt it with the birth of each child, and I feel it now as I exude frustration when they don't move their 90 pound bodies out of my way fast enough.

Jim wants me to clarify. I do love the dogs. I truly do. They are very good dogs. They are gentle and loving and the sweetest puppies anyone will ever know. We are lucky to have them as part of our family, even if I do have to resentfully pick up dog poop on occasion.

The good, the bad, and the ugly

GOOD
1. Dr. Kemeny did not disappoint. We had a great meeting with her. She came prepared with two trials that Jim qualifies for. She suggested using radiation microspheres. And she had him get a PET scan to determine if most of the cancer is concentrated on the liver.
2. If most of the cancer is concentrated on his liver, she's interested in treating the liver directly with a hepatic pump, which is placed internally at the main artery into his liver - it distributes chemo directly to the liver; or, possibly use the radiation microspheres. They don't have them at Sloan Kettering, but guess where they do have them. At Madison.
3. Dr. Kemeny noticed that Jim has ascites. Ascites is a collection of fluid in the abdomen, which doesn't sound like a big deal, but if there's enough in there, it can make things really painful. We're hoping that could explain some of Jim's abdominal pain. One of the nurses was telling me today that they drained so much fluid from one guy's abdomen that she actually realized he was quite thin - she thought he was chubby, but it was the ascites! I don't know if the PET scan will indicate how much ascites is in there, but I hope it gives us some answers.
4. We already got the PET scan done today. They'll have the results tomorrow. Luckily we got back from NYC late Wednesday night. The PET scanner only comes on Thursdays to Sheboygan, so I was able to get him a last minute appointment. Only in Sheboygan could you pull off something like that.

BAD
1. Jim has another pulmonary embolism, for heaven's sake. They wanted to hospitalize him in NYC, but when I explained that he'd already been taken off coumadin and put on another anticoagulent, they paused and told him that if he has any symptoms AT ALL, he needs to go to the emergency room and have a filter put in. When they walked into the little room in the doctor's office, they looked at Jim and said "What's up with all the blood clots?!" As you may remember, having a pulmonary embolism is extremely dangerous, and for most people, it's extremely painful - similar to having a heart attack. Jim didn't feel this one either.
2. The trials that Dr. Kemeny had to offer are in NYC. He would have to be there every other week. He's eligible for a Phase 2 trial through Dr. Kemeny, which we are excited about, but if we sign onto that trial we'll have to figure out how to get him to NYC every other week. Oy vey.
3. Jim's ankles are swelling and we're not sure why.

UGLY
1. Jim can't eat anything right now. He's having a hard time keeping food down, and having trouble with eating any quantity before it comes back up. (Sorry, that's why this is listed under ugly!)
2. Jim is losing weight, which is not good in cancer world. Losing weight can be dangerous because the body needs energy and fats to keep going through harsh treatments.
3. Jim is still in a lot of pain. We are anxious for the PET scan results and hopefully they can shed some light on his pain. Unfortunately, the pain could also be due to the tumors on his liver. Apparently liver pain can get pretty intense.

We left Sloan Kettering and Dr. Kemeny feeling heartened. Our trip to Mayo was such a bummer. The doctor was an old goat that suggested we stop treatment. Um, no. I felt like grabbing him by the lapels of his ugly tweed jacket with leather buttons and shaking him around while screaming "HE'S 38, NOT 70, YOU CRUSTY BLIND DINOSAUR!!!!!!!!!!!!" Sometimes reason gets the better of me. Shoot.

Anyway, Dr. Kemeny marched right in and said "It's not good news. You know that. Here's what I think we should do..." and proceeded to lay out the plans, as detailed above. I like a woman who knows what she's doing. (Probably because I have no idea myself!) My previous post "She's All That - And a Giant Pastrami Sandwich" is now upgraded to "She's All That - And a Giant Pastrami Sandwich and a Bag of Chips and a Diet Coke" (Coke added by my sister-in-law, a thoughtful touch, I think.)

The cancer journey is emotionally and physically exhausting. Jim is under a horrific amount of strain. He's having a hard time coping. Imagine if you had to have three scans inside the span of one week - one that makes you so radioactive that you really shouldn't be near kids or pregnant women.

We also had one of our harder talks about the future and what to do if things don't work for our benefit. We'd be stupid if we didn't talk about things. And that's just the kind of marriage we have. We talk about everything. Well, mostly I jabber on and on while Jim passively responds in an affirmative or negative. It's a crushing weight that Jim wasn't diagnosed earlier. It's not fair. He's too young. We have two little kids. Every one of our worst fears is mounting, and these are fears that we didn't even realize we could have until last September. When we drew up our wills, we thought "Well, we're just being thorough - it's not like we'll ever need these". My brain toils through the day on a 50/50 continuum. 50% of the time I'm desperately trying to figure out our next step. The other 50% is spent in prayer. (And on occasion I use 1% from one of the categories to look for Lola on the radio.)

We want to win so badly we can taste it. Literally, our lives are hanging in the balance and truth be told, we're scared out of our minds. The time in NY gave us some time to talk and come to some sort of peace with whatever happens. But believe me, we're going to be scratching and clawing and praying our way to a cancer-free life for Jim. Because he deserves it.

Emotional Triggers

If you don't know a lot about cancer, when the doctors are saying "You have cancer" to you or your spouse, what you hear is "You aren't going to live". From that point on, it's a frantic race to find a cure, but it's also a mental race to prepare for what you believe is the inevitable.

Truth be told, there are so many people that survive cancer. Even advanced stage cancer. And you know what? When you look at them, you can't tell that they ever had cancer. They just look like everyone else. There's no scarlet "C" emblazoned on them, although I imagine lots of newly diagnosed people would be relieved to see how many people have beat it.

In our household (as I'm sure with many others) we take on tasks that "belong" to us. I do the laundry. Jim mows the lawn. I do the cooking. Jim takes out the trash. I pump my own gas for the car and get my oil changed, but if there's something wrong with the car, Jim takes it in. It's the unwritten rule book. I've taken over most of the tasks while Jim heals, but even still, if I can't open a jar of jelly, I hand it to Jim after a couple of twists.

During the mental race to prepare for whatever the future may bring, there are different emotional triggers for us. When I learned to mow the lawn, Jim believed that I did it because I thought he wasn't going to make it. In reality I learned to use the mower because the grass was getting long and our next-door-neighbor that was cutting our grass had a quintuple bypass. Mowing the grass makes me feel like a contributor at home. I don't think I'm the world's best caretaker, but everyone wants to believe that they are helping Jim in some way.

My emotional triggers are different things...like the car seats. Children's car seats are a pain to install. The statistics for people driving around with their kids incorrectly latched are astonishing. We got to turn Jake's car seat around a few weeks ago. Jim wasn't strong enough to do it, so I tried to do it myself. It took me around 45 minutes, I was a sweaty mess, and I scratched up my knees installing the strap that goes into the cargo area. I asked Jim to come down and check my work. While on the way outside, Jim said "Did you move the straps?"

No.

Right then and there I knew I'd wasted my time. I was so angry that I had a full-out 2-year-old temper tantrum out in the driveway, complete with tears, stomping, and plenty of fist swinging. Car seats are one of those things: I don't know how to use them, and if for some reason Jim doesn't make it, I will be lost. I was so upset that I couldn't even have Jim explain to me how to fix the car seats - I just gave up and went inside.

Jim's emotional trigger is the basement. He wants the basement done in case something happens. He wants our kids to have a nice playroom, because he knows that if it doesn't get done, I can't do it myself. Jim's Dad is working on the basement this week, which is a blessing because it takes a big load off Jim's mind.

It's hard to talk about the hard things. We are having to face the reality that two traditional treatments haven't worked. But we are still hopeful that one will work in the future. We'd be fools to give up. We'd be fools to give in. Cancer will never prevail over us mentally. We are a formidable mental opponent for cancer, no matter how low we get. We have faith and we have people who lift us up when our faith gets low.

When they gave Jim his diagnosis in the hospital, the doctor (not Dr. Haid), gave a time frame on how long he thought Jim would live. My number one goal in life is to prove him wrong. He doesn't know how long Jim will live. None of us know. Mercifully, Jim doesn't remember what the doctor said, and I won't ever tell him. Who can pin a time frame on someone's life? People have come back from worse, and I hold hope that Jim can, too.

Sometimes we get depressed or an emotional trigger makes us upset. But it doesn't mean we think he won't make it. It means that I don't ever want to live a day without him here to install car seats. It means he wants to see his kids play in the new basement. It means we will push on together, striving for many more happy days when we won't be taunted by emotional triggers.

All about Mayo

Our trip to Mayo was rife with blessings and disappointments.

Good things about the Mayo trip:

1. The Mayo Clinic is amazing. There's been some serious thought put into the buildings and the treatment of the patients. It's literally a well-oiled machine.

2. They handed us an itinerary after we checked in, and they followed it to the letter. They give patients a lot of time to get from one appointment to another. I figured that most of the patients are pretty old, and there's some considerable walking between buildings. We were early for some of our appointments and they took us immediately and were able to, in some cases, finish Jim's tests even before we were scheduled to be there.

3. We finished all our tests on the first day by 2:00. We went back to our room to rest up. That's where things sort of took a turn.

At 4:00, one of the Oncology Nurses called and said that Jim's CT Scan showed a sizable blood clot in his leg, and that we needed to report to the ER immediately. Uh...okay. This is a different blood clot than the one he had about a month ago.

Before they called we decided to rest in the room rather than go on a shopping excursion, which is what we originally wanted to do. So we just packed everything up and got ready to go over to the hospital. We sat in the ER from around 4:30 through around 10:00, where they finally decided to admit Jim because they didn't want him moving around with the clot in his leg.

BUT

When they admitted him, they wanted him admitted on the Oncology floor of a different hospital. So they gave us a ride over to the other hospital in an ambulance. I've never been in an ambulance before. That was pretty neat, despite the smell of exhaust.

By the time we got over the other hospital and saw that doctor, it was 2:00 am. At this point, we were pretty tired. And the doctor we saw was a Resident - a general doctor that looked like she was around 17 year old. Not a Fellow (someone who is interested in specializing in the field), and not what Mayo calls a "Consultant", discreet for "Head Honcho, Knows A Lot About Cancer".

We got around 4 hours of sleep before the day Friday started - tons of deliberations over what to do with Jim. Originally they wanted to put in a filter to block the clot from moving into his lungs and becoming a pulmonary embolism. They kept asking him if they could access his port and hook up an IV. He didn't want them to because the thought of using the port makes him sick at this point. The port is that button is his chest that they used to hook is 5-FU pump into, and the mere thought of that makes him sick. So about the 15th time they asked about the port he finally threw up, literally, and they finally got the hint and stopped asking. They had us prepared to stay another night and have the filter put in. It's typically an outpatient procedure, but we weren't sure if they would make us stay to monitor him.

At around noon, one of the Consultants and the Fellow came in, and determined that Jim's coumadin (blood thinner) isn't working for him because he clotted right through it. They decided that they didn't want to put the filter in because a filter is foreign, and more clots could form around the filter, and that would defeat the whole purpose. So they ended up prescribing him some shots to replace his coumadin that will supposedly work better. They are subcutaneous shots that Jim will have to administer himself. Argh.

All this happened and finished by around 1:30. Of course, we didn't actually leave the hospital until after 6:00pm. Administration. We were tortured by seeing the Resident once again, during which she asked us all sorts of questions using the wrong words for medications and symptoms. They finally determined that we could see another consultant before leaving, since we missed our outpatient visit on Friday morning.

The consultant basically explained to us that Jim has cancer (duh), that he hasn't responded to the traditional treatments (double duh) and then he proceeded to explain to us about how clinical trials work. I started to wonder if we were on candid camera. Um, I hope you didn't just come here to explain things we already know. But, in fact, that is why he came over. Frustrating, to say the least. He explained trials to us, but didn't actually investigate whether or not Jim would qualify for any of the trials. Apparently a lot of people with cancer are complete ignoramuses, because I found the fact that he explained some very basic principles to us really insulting. Even when I pushed him and asked him about specific treatments, he still couldn't muster a solid answer. Indecision and apathy are my two biggest pet peeves. It's not like we're going to take him out and shoot him if the treatment he recommends doesn't work.

Basically we drove 4 hours for them to find a blood clot in Jim's leg. It was a blessing. After all, they took Jim off his coumadin. And they seemed very excited about taking him off it and moving him to another anticoagulant. They said that sometimes coumadin interferes with chemo. Huh. Well I wish it was as easy as that.

Then, one more humorous story. The cleaning lady came in to spruce up Jim's hospital room. We chatted politely, and then she took the liberty of closing the door, sitting down on the end of Jim's bed, and explaining her homemade cancer cure, given to her by the elders in Bosnia. If I had a nickel for every person that had some kind of cancer remedy, I'd make a fortune. And I certainly wouldn't have to worry about paying for medical bills.

We're off to NYC on Monday. Let's hope Nancy Kemeny is a bit more insightful. I'm going to give her a leg up by typing a list of exactly what we want and handing it to her office a couple of days early. That way she can have someone else look up clinical trials for Jim. One more thing: we can't sneak our way into the trial that we were interested in, but they did give us a great lead on another trial that we could try for. We'll start there.

So, the cure for cancer wasn't waiting at the door for us at Mayo. That doesn't mean it's not waiting for us somewhere else, though.

Leaving for Mayo today

Hello friends. It's July 4th. A day to celebrate our freedom. Hopefully next year at this time we'll be celebrating Jim's freedom from cancer.

We leave for Mayo this afternoon. We're going to miss the Kohler fireworks with our kids. I am a little disappointed, I have to admit, but our appointments start at 7:30 am tomorrow morning. The Kohler fireworks are something to be seen. They kick things off with a Sousa concert in a bandstand. They sell cotton candy and popcorn. Every kid gets a balloon. There are hundreds and hundreds of people there. It's amazing. Like something you'd expect in a Norman Rockwell painting. Janet is going to take Rachel over to our friend's house to watch the fireworks tonight. I am glad that Rachel will be there and have some friends to hang with. Jake goes to bed at 6:30, so Jim Sr. will stay with him. Trying to bring Jake to the fireworks would be disastrous. Jake doesn't do well off his sleep schedule.

Please pray for us. We are scared. We still haven't heard anything about whether or not we can get that trial drug, and we were hoping to go to Mayo armed with that as an option. Right now we're just going to have to keep our minds open to the alternatives. I know it's all going to be okay in the end, but that doesn't relieve our fear at this point.

Tomorrow is an entire day during which Jim will be poked and prodded and have to drink contrast fluid. Please pray that he'll have the strength to get through tomorrow. Please pray that we'll find some good options and hear some good news. Please pray for us to have the grace to make it through the next couple of weeks so that we can give Jim the best treatment possible. Please pray for our family - that we can continue on this journey together.

Poops

We didn't make it into the trial. There were more than 50 applications for the trial before 7:15 on Friday morning. We were the only ones submitted from Madison, but of course, we're an hour behind the East Coast, so who knows what number we were in line. There were only 19 spots. We just thought we'd be one of those 19, especially since we were on such a winning streak.

The good news: we are investigating other avenues regarding the trial drug. We still have a traditional chemotherapy we can use. And there are other trials available.

We are not discouraged.

Here's the way I figure it: those 19 people who are accepted into the trial are not Italian. They do not have the same kind of connections that we do. As my father-in-law says, there are those that are Italian and those that want to be Italian. Good thing Jim isn't Irish or we'd hand him a glass of Guinness and say "It's healing in a glass! Drink up!" (Or at the very least, drink this Jameson and afterward you won't care that you didn't get into the trial!)

For 12 years I've lamented about the fact that I voluntraily set myself up for a lifetime of people saying "First name Marven, last name Tano?" Now it's payoff time, baby.

I'm not Italian, I'm Irish (see above), but if we don't get that drug, do you think someone will find a horse head in their bed?