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.

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.

Memorial Day

Maybe we can use Memorial Day as a multi-purpose day. A day to remember our veterans, but a day for new beginnings as well. Sort of like New Year's, but with the added bonus of good weather and people already focused on an issue. Is it wrong to ask the vets to share? Would they share knowing that we're embroiled in a battle of our own? I'd be willing to share my birthday with cancer patients if it was for their good fortune.

It's a beautiful day in Wisconsin. Jim is feeling better thanks to a healthy dose of Vicodin and Ambien. He got almost a full night's sleep last night. He's off to the clinic today to get a shot of Neulastin, the drug that increases his white blood cell count.

He's very, very tired, but not sick. His stomach (abdomen, to be exact) is in a tremendous amount of pain from the chemo. He's contemplating whether or not we can make the drive up North. He's got his compression stockings. Driving up North won't change his physical symptoms, but it might help mentally.

There's something about the air up North - it's - fresher. And...better. And...smells like pine. If he decides to make the drive, we'll stop every hour and just take a break. He'll need the movement to ensure that we don't cause any more blood clots in his legs. But right now, it just seems that getting out of the house would be a mental blessing. Our house is great, but having to sit on the same couch, day after day, with his leg propped up, is not good. At least if we go up North he'd be sitting on a boat with his leg propped up.

I'm using Memorial Day to remember our vets, but also to renew my faith that Jim will be healed. We will have a miracle. We will prevail. Sometimes it's tough to admit we're sad. Admitting that we're sad almost seems like admitting that we're not winning, even if that isn't the case. Of course we'll have weeks when we're down. But today, I choose happiness. I choose hope. I choose to remember our vets, support our troops, and support the troops in our own personal journey toward victory.

Updates

Things going on at the Marventano household:

1. Rachel had her first dance recital last weekend. I took her to a salon to get her hair curled. She got to sit in a fire engine while having her hair done. Then onto the recital...she was fabulous. Not scared at all, and in front of quite a large audience - at least around 200-300 people. She actually came out onto the stage waving. The girls did a teddy bear dance. At the end they got to throw their bears up into the air. Apparently that was Rachel's favorite part because she took the liberty of tossing her bear. Twice. Rachel is in the middle in this picture.

2. Jim's leg is getting better. He still has to keep it elevated 95% of the time, but he's not longer using the wheelchair, which is nice. I'm not such a hot wheelchair driver. Strollers turn on a dime. Wheelchairs hosting a 200 pound man don't. He's even managed to get off the crutches, although he can only walk for a few minutes before the pain becomes so intense he has to sit. I asked the nurses at the Vince if it was normal for a clot recovery to take this long, and they confirmed it. Darn. I secretly suspected that he's been okay since Saturday, but he was just having fun bossing me around from the couch.

3. Jake is a drooling, biting, screeching cutie. Good thing he's so cute. He's in desperate need of a haircut, but I refuse to have it cut until he's a year old. The poor kid looks like one of the Ramones.

4. I spoke with the Mayo Clinic today. We've set up a tentative appointment for the 3rd week in July. The reason for the time gap is that they agreed with Dr. Holen's assessment in Madison - stay the course and reevaluate in two months. Even if we drove over to Mayo today, they still wouldn't take him off the regimen he's on. They were also highly complimentary of Madison, which gave me some mental relief. They also commended Dr. Haid for urging us to seek out other opinions.

5. I learned the hard way about letting the lawn go a little too long without cutting it. Now, bear in mind that I've mowed the lawn twice before today. It was sort of fun. Before today. But I've been putting off mowing the backyard because I hate to pick up the dog poop. My neighbor, Kate, graciously mowed our front yard (not because it was unbearably long, but because she's cool like that), but was wise to leave the backyard to me. I hate the dog poop. So the lawn was so long tonight that the blade got stuck in the mulching and basically shut the mower down. I'd just filled it with gas (a first for me), so I couldn't figure it out. Annoyed, I had to come in and ask Jim. I'd be one of those people that pulls mulch out from the blade and gets her hand cut off. What a way to make the 5 o'clock news. The blade got stuck more than three times before I started leaning on the handle to lift the front of the mower up. By then the yard was pretty much done. I'm learning all sorts of new things. I've always considered myself a little prissy when it comes to manual labor. Why do the work I can pay someone else to do? But I'm finding there's almost a meditation to it. I can sort of zone out and not have to think about...anything.

6. Rachel's last day of preschool is tomorrow. My heart aches. I frosted 50 cupcakes tonight for her class. 20 kids, plus a parent - plus a couple who'll want more than one. I'm really getting into the Stepford thing...frosting 50 cupcakes? I would have turned my nose up in a minute before Rachel was born. But now...Her last day of preschool. Sigh.

7. We went over to the Vince today to return the wheelchair that we hijacked for the weekend, and for Jim to have his blood tests. We ended up staying and talking to the nurses for quite a while. They are just so soothing. I imagine they really want us to go home so they can, you know, help other patients. But they are so awesome.

8. I put Jake to bed at 5:30 tonight. Rachel had swimming lessons at 6:00, and I couldn't handle schlepping them both around the pool. Good thing because Rachel had a hissy fit at the end of her swim lesson (in front of everyone in Kohler, whose kids are perfect - strike one for the crazy family). She was in bed at 6:50.

9. My horse won on The Bachelor. No making fun of me. Jim was rooting for her too. But...in his defense, he can't get off the couch. I watch it voluntarily.

10. Tomorrow Jim has an appointment with the therapist. I think it's good to have someone to talk to about this emotional rollercoaster.

Things are good, then sometimes they're not. Sometimes we forget about what we're dealing with, especially when we see the kids so happy. After all, not every moment has to be double-dose of reality. Watching Rachel frolic around in a huge tutu is good for the soul.

The emotional rollercoaster clicks uphill...slowly

My subtitle for this post: check out Jim in his compression stockings!

At least Jim's got a sense of humor.

Madison was a fairly positive visit. We met with Dr. Holen and his student doctor (Fellow). They didn't feel that there was enough appreciable growth to take Jim off his current chemo regimen. They (the medical community) typically characterize significant growth as around 20%. They thought that his growth measured around a 5% increase, subject to opinion. CT scans are so subjective - it's not an exact science.

That being said, they were hesitant to start Jim on a trial. They would like him to continue on his current regimen and replace one of the drugs, Vectibix, with Erbitux. Vectibix is essentially a sister drug to Erbitux, but it's not as widely studied. They want to monitor his improvement over the next two months and then decide what to do.

There was a trial that I was interested in for Jim that is studying a previously approved drug in Europe. Unfortunately, the study is closed right now. They put Jim's name on a waiting list. The study is closed nationally, as the study filled up with the initial candidates - they are currently reviewing the results of the initial candidates, and then they will determine whether or not to add more people to the study. If the study opens up, they will review Jim's improvement and decide whether to take him off his current regimen and put him on the study.

Dr. Holen and his Fellow also believe that Jim's CEA level is elevated because of the cryoablation. They believe it's the tumor breaking up and sending all sorts of protien into his bloodstream. Needless to say, we were delighted to hear that. On the other hand, they were not too jazzed about cryoablation as a method for removing the tumors on Jim's liver at this point. They urged us to consult with them the next time we are recommended for cryoablation.

So, that's the tall and the short of it. We didn't go there and get horrible news. We didn't go there and hear "No Evidence of Disease", but what we did hear was "Stay the course. You can do this. And there are still other options." We left feeling a little lighter. We will continue to go to other hospitals for consultations. We're working on our appointments at Mayo and Sloan Kettering, as well as considering other places. We have HOPE.

Every Little Bit Helps

I'm going to report on the positives in our scenario today.

1. Jim got the OK to stop his daily shots yesterday, since his blood level is back to what Dr. Haid refers to as "theraputic". Jim will continue on with his coumadin (blood thinner), as usual. He goes back in on Friday for another checkup. His leg is still in pain but he's taking painkillers to help control it.

2. Rachel is going out with a little friend after school today, which will give my Mom a break. When I called my girlfriend to set up the playdate, I basically had a mini-meltdown on her answering machine. Um, hello? What happened there? I'm still not sure, but she was totally cool about it. If there's one thing I can say for the people of Kohler, it's that they know how to take things in stride.

3. We've had several visitors over the past couple of days - a friend from our church who beat advanced prostate cancer, a girlfriend from church who gave us inspirational CDs for the drive, and one of the 2K nurses gave us a fun bag FILLED with stuff for the drive - a Van Morrison CD, Diet Coke for me, water for Jim, muffins, sunflower seeds, nuts, cookies...you name it! We were delighted we got a chance to visit with her.

4. Guess what I got?! Six bottles of wine delivered to my door last night, courtesy of Janet's family (Aunt Cheryl, Uncle Bob, Ted and Tonia - thank you!). I thought of cracking into one last night, but thought better of it in light of today's drive. Friday night, here I come!

5. Please keep us in your prayers. We are off to Madison today. I believe that they will have something for us. A study or some suggestions, at the very least. We have heard great things about this doctor and we are hopeful that he's got some good clinical trials for us.

6. We got a call back from Sloan Kettering, although I missed it, so I'll call them today and hopefully they can squeeze us in for an appointment.

It's easy to complain about what's going wrong. Sometimes it's hard to be thankful for the things we do have in the face of troubled times. But we have to remind ourselves (or, more specifically, I have to remind myself) that we have two beautiful, healthy children. We live and attend church in a fabulous community, where people are truly banding together and lifting us up. And we have family that supports us through thick and thin. The one statement we can't add to this is "at least we have our health", BUT, perhaps with all our other blessings, we'll be able to overcome and prevail over a situation that will be a blip on the map of our life.

AAAAAARRRRRRRRGGGGGGGHHHHHH!

This poor guy can't get a break. Jim's had some pain in his calf since he returned home on Sunday evening. We thought he pulled a muscle while getting onto the boat this past weekend. It started out as a slight pain, and has grown increasingly worse.

Yesterday, Jim went to get his light therapy for the neuropathy, and explained the pain in his calf to our friend Ken. Ken did some tests and sent Jim up to Radiology for an ultrasound. (The Physical Therapy Department is also housed in the hospital, which is where he gets the light therapy.) So during the ultrasound they discovered that Jim now has a blood clot in his leg. Right now there isn't any blood moving through the main vein in his right thigh, which is why his calf hurts - there's not a lot of blood getting to it.

As you know, Jim developed a pulmonary embolism (PE) when he was first diagnosed. So we already knew he was prone to Deep Vein Thrombosis. But he's been on blood thinners since they found the PE, so we didn't think another clot was likely. Apparently we were wrong. We are thankful that Ken was able to diagnose Jim, and that we caught the clot before it broke off and made it up to his lungs. Apparently an embolism in the lungs can be excruciatingly painful, like having a heart attack. For whatever reason, Jim's PE wasn't that painful. But having blood clots move around the body is not a good thing - that's what can cause a stroke.

SO, NOW we're going back to the Vince daily so that Jim can have shots and daily blood tests. He's going to be wearing a compression stocking for the drive to Madison. (Pictures of that one to follow - I can't wait!) And he's got to stay off his leg. He's on crutches and he said that the pain is almost unbearable. He slept on the couch last night because he didn't think he'd be able to make it up the stairs.

The injustice of it all is what really gets to me. When is this guy going to get a break? Yeah, yeah, I know, life's not fair, blah blah blah. We're only dealt what we can handle, blah blah blah. We need some serious intervention in the fairness department. We need a miracle. Or a medical miracle. Or a self-generated miracle. Where ever we believe miracles come from - that's where I want one from. I won't be picky about how it arrives or in what format. The injustice really burns my shoes. No 37 year-old should have to say "Whew! Good thing we caught that blood clot in time so that I can get daily shots, after which I'll go on fighting my cancer while I can't feel my feet." The injustice of it drives me to tears.