Dex wakes me up at 5am

Please note that I went to bed around 9pm, so I still got 8 hours of sleep...

Dominating Wristbands

It's so encouraging to get facebook pictures, emails and so on with people who have joined forces to help us kick Multiple Myeloma, build awareness and take on the "dominate" life philosophy. I will continue to post all the photos I am able to get my hands on....so keep sending me photos with you dominating your Cancer Kicker wristbands! We appreciate everyone of you for your support and thanks for your patience on the distribution!


12/14/09: Frances @White House [Washington DC]

12/3/09: Ehrika [Tecumseh, MI]

Mrs DeLong's AP English Class [Comstock, MI]




Walter [Flint, MI]


Cassie's big bro, San Francisco


Ocean [Ann Arbor, MI]


Jeff, Alysa, Joe, Leila [Tucson, AZ]


Little Sister's Friends [Ann Arbor, MI]


Little Sis' [Tampa, FL]


Zak [Ann Arbor, MI]


Julie [Kansas City, MO]


Laura, Tommy, Heather [Tampa/Ann Arbor]


Michigan Faithful [Ann Arbor, MI]


Jake - [Midland, MI]


Jill [Midland, MI]

Keep dominating!

Cycle Two.

Hey everyone. We've re-joined the rest of the world albeit in limited capacity and wanted to give you all an update on that whole pesky myeloma situation. That's why we're all here after all, right?


First thing's first... constipation is no longer an issue. Can we just talk for a moment about how awful that whole hospital fiasco was? It was awful. Okay. Now let's never revisit it again.

We are in the infusion center as I type. Cycle two began on Tuesday. For those of you who are wondering how this whole cycle thing works, here's the breakdown.

Phil goes in to the infusion center at the hospital where, by the way, we are not allowed to shoot video and gets chemo drugs via an IV. He will be doing four 3-week cycles, during which he goes for infusions on Tuedays and Fridays on weeks one and two, then has the third week off. Each week starts on a Tuesday and ends on the following Monday. On Tuesdays and Fridays he gets Velcade. On the first Friday of the cycle he gets Doxil. This current cycle is cycle two. I don't expect you to remember all of that, and there will be no test. Just wanted to let you all know what exactly we're doing here.

Now for the super awesome news. We got the cycle one results back and Phil's numbers look fantastic.

M-Protein is now 1.9 (previous was 3.2)
Kappa Free lite --> 43.5 (was 83.6)
Kappa/Lambda Ratio --> 114.47 ( was 491.7)
IgG --> 2430 ( was 3260)

There are lots of places you can go to find out what these things mean, but the important thing is that these numbers are all coming down significantly. And after just one (incomplete) cycle! This is really, really good.

We are doing generally well. It's been a tough comeback from a couple weeks ago but we've recently removed a couple of chronically stressful situations from our lives and that has lightened the load quite a bit. Plus we have friends and family members who just kind of show up and help (Thank you! We love you!) and that allows us to focus on the important things, like whether or not Phil has remembered to take his laxatives. Not even kidding.

Also, as another high point to be mentioned, we heard the baby's heartbeat this afternoon at my midwife visit. I had a moment of panic like oh dear there's really a baby in there which means we're going to have three- THREE but then I realized that it's really pretty awesome and I was also relieved that there was just one. So now I'm cool.

I think that's everything for now, folks. I'll try to update more often now that I'm out of my padded room.

If you're still waiting on your bracelets...

...we have another shipment going out mid-week. I have a whole slew of folks helping me address, stuff, seal and mail (Thank you Erin, Jessica, Mom and all others who have volunteered- we will be calling!) so you all should get them by the end of the week. Thank you for your patience, Domination Army.

Backlogged.

In more ways than one. I have bracelets sitting here to be mailed out but the universe sat on top of us over the weekend and so I haven't had a chance to take them to the post office. (Because the envelopes are puffy, they are "not machinable" and so each one has to be weighed and stamped individually. An impossible task to accomplish with two preschoolers in tow!) They will get out to you soon though, so we thank you for your patience and again for your generosity.

Obviously we had a rough weekend. EVERYONE here had a rough weekend. Phil is home and is on the mend but is still not 100%. He says his pain is a 1 or 2, which would mean a 6 or 7 for those of us who do not have super-human strength. My parents came over yesterday to give us some time alone to process what's been going on and we came to the conclusion that we were naive to think Phil would just breeze through chemo because he is "young and healthy"... which is what everyone always tells us. The truth is, he isn't healthy. Look at his medical file. We were broadsided this weekend and truly never saw it coming, but the best thing we can do now is take some time to rest, pick ourselves up and keep pushing forward. Your sincere prayers, positive energy and heartfelt encouragement strengthen our family when we feel we don't have the energy to fight. Thank you.

I began having some pretty strong contractions last night which have subsided today thanks to the prayers of my warriors, a good night's sleep and lots of water.

My children are having a rough time today, particularly Iris. They are young, so much of this goes over their heads, but they are wise and sensitive enough to know when things aren't right. Today they are getting lots of cuddles and snuggles and kisses and hugs.

This week is Phil's week off of chemo. We'll be taking a step back from this blog for the week as well. (Thanks for the encouragement here, J.O.) It's important that we take this week to be still and quiet and try to gain back the peace that was lost in our home over the last few days.

We plan to be back next week with an update so we encourage you to check back then.

"One can pay back the loan of gold, but one dies forever in debt to those who are kind." -Malayan Proverb

Thank you all for your kindness, encouragement and grace. Love to all.

Cassie and Phil

Phil & Cassie Plus Cancer Show: Parking Cars

My stomach problems don't resolve in time for me to go to the game with Ocean. So I decide to dominate parking cars in stead.

Phil & Cassie Plus Cancer Show: Going Home!

After 36 hours in both the ER and the hospital finally a young, beautiful, angelic resident gave us our release! We love you R!!!! Now that we are home, Phil is starting on the GoLYTELY, which will probably be anything but light. He's really hoping to make the Michigan Football game tomorrow with Ocean. They plan to go on the field before the game to watch the winged helmets run out of the tunnel and take the field.

Thanks to Anna for an awesome dinner last night. The perfect meal for Phil's belly trouble, and also the perfect meal for those of us who were just HUNGRY! We have the best friends ever.

Phil and Cassie Plus Cancer: Frustrated Phil in the ER

Tired, Constipated, Hungry all at 4am. This is me not doing so well, although I think I was able to still keep a little composure. I am sure it got worse throughout the ER stay, but I didn't record any of that.

Still in the Hospital

So I am still being held hostage against my own will at the hospital. I was admitted last night, after roughly 16 hours in the ER running a series of tests that proved my suspicion that I was just full of crap and that dropping laxative bombs was the answer to all my problems. But if would have been that easy I would have missed out on the extra radiation from my CT Scan, plus the other 2 imaging devices they used to rule things out. The CT Scan results are back and there are no concerns. I guess peace of mind is worth something, but I was hoping for a peaceful bowel and taking snapshots of my mid-section all day wasn't getting me there. Not to mention I was pushing 48 hours of no sleep and food. That makes for a not-so happy Phil.




So how do I get out of this place?!?!? Answer: the doc says I need another bowel movement before I can go. So yes, I have to go before they will let me go. How crappy is that? Talk about some pressure. The worst part in my mind is that they are not pushing laxatives and they also don't want me to drink water. As a doctor in training through this experience, I would think Laxatives and Water are the god send to solve these issues, but apparently I am just a washed up kicker who needs to be obedient and more trusting.

We'll be sure to do a Vlog (Video blog) of our ER visit/hospital experience later today. I actually recorded myself in the ER yesterday when I was very upset....not sure if I am going to expose that side of me to the public....unless you guys comment and tell me to do otherwise!

Go Blue, Dominate Myeloma.

Phil

We're in the E.R.

Phil went to the E.R. with Stomach Lava at roughly 4 in the morning. My parents came over at 8 to be with the kids so I could come up here to the hospital. Right now he's getting an ultrasound of his pancreas and gall bladder, since his pancreatic enzymes are elevated. We got in trouble for not having him on Senokot and Colace for constipation, which is totally my bad. Initially we were told to give Phil a stool softener every day, which he's been taking, but then on Tuesday our doctor told him to get on laxatives. I then promptly dropped the ball, and we just got a talkin' to.

So I'm not sure if that's scandalous enough to qualify for a reality show, but we're doing our best to keep things lively for y'all. I'll update this post once we have more info on Phil's condition.

UPDATE 9:48pm EST- Phil has been admitted. They are concerned about a bowel obstruction which is obviously very serious, so they will be doing a CT scan to figure out exactly what's going on and why four different industrial-strength laxatives have done nothing but make Phil vomit. Mama Brabbs came down early so when I came home she went up to the hospital and she'll spend the night with Phil and make sure he gets his pain meds when he needs them. More from me once I know more.

UPDATE 12:26am EST- So I ended up having an erruption on the bottom end of things right before they wanted to shove me into the donut hole for a CT scan of my impacted bowel. Fortunately I made it to the bathroom in time! I feel like half of the molten rock that has formed due to the Stomach Lava (Webster- please add to the dictionary) is no longer with me...yipee. I still have abdominal pain, but the doc doesn't want me to drink water and continue on laxatives until the morning....which I sort of disagree with, but I can understand her point in terms of not wanting to just dump more stuff on a clogged system...although I don't see many other options.

What does this do for Phil's chemo and Velcade infusion? Answer: everything is on hold. It's kind of disappointing that we didn't make it through the first cycle on all the meds, but we learned a heck of lesson today. That is, don't just talk about Stomach Lava, blow it up before it gets out of control. Also, we were trying to stay very natural with the laxatives, but my attitude now is that the chemo drugs aren't natural, so I have no problem fighting fire with fire.

That's it for now, time to sleep, which hasn't occurred since 5am Wednesday morning (going on 48 hours of domination).

Keep posting comments and suggestions....they are extremely helpful. Our boy out in LA was huge today in responding to our email questions from the ER...we love you man! All the comments and feedback throughout this process are HUGE.

Dominate. Phil.

Video Blog 3: On Stomach Lava and Why Kickers Are Smart

If you ordered bracelets...

Will you do me a huge favor and send an email to cancerkicker@gmail.com and tell me how many wristbands you want, if you haven't already? Please also include your name so I can match it up with the correct order. I have hundreds of orders to sort through (thank you , everyone!) and 99% of them didn't specify a quantity which means I'm having to email everyone individually and wait for responses before I send out orders. So if you all could do me that small favor that would free up many hours of my evenings and early mornings!

Thanks again, so much everyone, for your support and generosity. We put in another order for bracelets which should be here next week so if you placed an order in the last couple of days we'll get your bracelets shipped by the end of next week.

Y'all are rock stars. We're blown away by the support.

XOXO- Cassie

Video Blog: Week 1 in Review

Unbelievable

We are humbled by the support and awareness MM has gotten over the last week since I started treatment last Tuesday. We had over 2,200 visits to MMForDummies, from 46 states and 23 countries...all in one week! Below is a quick glance of the growing awareness to a disease that will affect more than 30,000 individuals in the next year, and many more friends and family members. But together we can KICK IT!



















There are still plenty of Cancer Kicker Bracelets! Click the donate button to get started. Thanks Everyone!

You guys are too much.

Holy Myelomey... we spent the majority of our morning and early afternoon stuffing, addressing and mailing envelopes full of Cancer Kicker bracelets to you all. Some were sent clear across the country, and some were sent to addresses just a few streets away from ours. The entire time I was on the verge of tears because, seriously everyone... thank you. I can't believe how many of you donated so generously and sent amazingly encouraging messages, some of you already dear friends but most of you never having met us. We are touched and humbled and so, so grateful to all of you, our friends, old and new.

I took about 35 envelopes to the post office today. I was told they would go out on Monday so if you payed via Paypal you should be getting your stash sometime next week. Wear 'em proud. The more people there are who learn about multiple myeloma (MM), the more likely spell check is to eventually STOP telling me it doesn't exist. We don't want to just kick it, we want to cure it.

Off to get the kids in bed and get ready for a little football action. Go Blue!

Picture of Phil dominating his nightly chemo pills in preparation for the Wolverines domination of the Hawkeyes:

How chemo is like child birth and why you probably shouldn't call me if you're in an unplanned crisis.

You know how when you're 42 weeks and one day pregnant and then you go into labor and you're in hard labor for 24 hours without any drugs and then you finally get an epidural but you can't sleep because you're too tired and then the baby is born four hours later and even though the gender was a surprise no one says "It's a boy!" but you don't care because it could be a platypus for all you care and all you can really think is What day is it anyway and what country am I in and can someone please bring me a sandwich?

Maybe you've never had that experience but that's how I felt after Ocean was born and that's kind of how we felt yesterday.

We've had a year to build up to the start of treatment and it was sort of anti-climactic I guess. A lot of waiting around and meeting different medical people and getting poked and prodded. We had a little time to get some food at Einstein Brothers in the hospital (they must do really well) and Phil commented that it felt like we weren't in Kansas anymore. Or that we were really far from home or something. I wasn't really listening carefully because my salad was that good. But I got the gist of what he was saying, and I could empathize because after Ocean was born we were in a hospital only a few miles from our house but I felt like I was on a different planet. I finally had to turn on the TV in my post-partum room just to reassure myself that I still lived on Earth (and that the disappointing Bachelor finale the night before hadn't been a labor-induced hallucination).

So a gigantic thanks to my parents for coming through big time. My mom stayed at our house with the kids (we kept Ocean home from school because he's sick) and my dad met us at the infusion center so he could stay with Phil while I went to my own doctor's appointment, and then got Phil's Dexamethasone prescription filled. (I was going to make a joke about Phil being on meth or 'roids but I have enough sense to realize that may be slightly off-color for the likes of this blog am terrified someone from his work might read this and not get that I'm kidding.)


So Phil is officially on three "study" drugs (Revlimid, which he takes orally at home; Velcade which he gets during his infusion at the hospital two days a week; and Dex which he takes orally at home) and a whole host of other medications and prescriptions to prevent common issues/side effects. At Friday's infusion he'll get Doxil, which is the fourth study drug.


Last night, after the laundry was done (sort of), the dishwasher was loaded and everyone was in bed, I made myself some hot cider (Thank you , Stef K!) and turned on the TV. Deep breath... the world is still turning and life is still moving and we are still a family and we still have each other.

Phil woke up this morning feeling good. Before he left he said, "You're doing well, huh?" He was surprised, and I wasn't offended because it's common knowledge 'round these here parts that I tend to freak out during crises OMG a hangnail where's the first aid kit someone call 911- no- the national freaking guard because I'm curled up in the corner panicking my face off but I reminded him that during times of planned crises I actually do quite well. It's the surprises I don't like. I've been working up to this one for a year now. Game time, Blagojeviches.

Chemo Dorks: Day 1

More to come on this post after we make it through Day 1 of chemo (noon kickoff). Phil will not be resisting drugs today, so hopefully the DARE police don't follow our blog.

10K is over, Time to race through treatment

On Sunday Ocean and I competed in the 10K Big House Big Heart run that finishes in the University of Michigan football stadium.



Although there were not 110,000 people in the stands I feel like over the last number of months we have been getting enough hugs, phone calls, emails, facebook messages, blog comments, tweets, and even old fashioned letters that would fill that stadium.

I am so thankful... for the awareness of Multiple Myeloma that is growing due to my diagnosis. Better than the awareness is the opportunity we have received to reconnect with so many awesome and caring people whom we have met and shared experiences with during different stretches of our lives. Not to mention all the cool new people we are meeting along the way. We feel so lifted up and empowered to take on the Myeloma with an army of loving support.



The biggest take away from running the 10K was the importance of having a loving community nearby. I was blessed with the opportunity to run the race with three guys I lived with during my final year of college. We were able to run the race at a pace of 8:42 with three strollers carrying a total of four kids; one being my son (Ocean) who is 3.5 years old, over 40 pounds and probably a little over-sized for the jogging stroller.



At the end of the race I was greeted by my wife, daughter and father who were sporting their shirts that said: "My [Husband/Daddy/Son] is my Hero".



Inside I did everything but cry. I felt so loved at the end of the race and it numbed all the pain from the race. It will be that same love that will get us through this next part of the race and we are so thankful to have you by our side.

Thanks everyone!

Phil

And another.

The Saginaw News ran an article on Phil today. It's amazing how quickly word gets around these days. Each of these journalists contacted Phil within a day of the previous story running.

I also promised you a picture of Phil's bone marrow site (his butt) in the last posting. He made sure I took it last night before he went to bed. I've gotten pretty awesome at ripping bandages off, by the way. I say I'm going to count to three and then instead of counting I just rip it off. Anyway, here's the picture.

Welcome, Michigan Daily readers.

A wonderful article about Phil appears in the Michigan Daily today. I was telling Phil that I was hoping to convey where we currently are in our acceptance of and resolve with this disease and it's hard to determine how well the article got that across... but I also hope it raises awareness about this terrible cancer and how serious it is. We need more people pushing for a cure. Or, at the very least, we need spell check to recognize myeloma as an actual word.

Phil spent all day at the cancer center yesterday; I was there with him in the morning. It's fascinating to watch people come and go. When anyone gets off the elevator everyone sizes them up. We're all thinking the same things. What kind of cancer does she have? Where is he in his recovery? Is she the patient, or her child? I'm sorry you're here.

If you know Phil, you know he's so upbeat all the time. We joke that he's the Tigger and I'm the Eeyore. He deflects negative energy really well and that serves him well in this arena but also brings a lot of life to the staff at the CC. Example: The cute tech was trying to draw his blood and Phil, eyeing a domestic abuse poster on the wall, leaned toward her and whispered, "Are you the person I'm supposed to tell if someone is hurting me?" I immediately yelled, "Oh, stop!" Phil's all, "See the abuse I have to take?" The tech, of course, was cracking up and Phil just dissolved into silliness for the rest of the appointment. There may have even been some non-serious flexing going on during the EKG.

Phil also had to do an x-ray and bone marrow biopsy (for which he refuses to have medication given to him... crazy, I say) and he did great. During the bone marrow they kept asking if he was in pain and I believe he laughingly told them to just do their job and not worry about him... that if he was in pain they would know. I'm just saying, he should be the bearer of children in this family.

We're going to try and be better about taking our camera into appointments with us. Phil was disappointed he didn't have a picture of his butt to post during the bone marrow, but I assured him we could take it later today and post it. So be on the lookout for that.

Another item up for discussion is what we're going to do about keeping everyone healthy. Initially when we spoke to our medical team they didn't seem concerned about Ocean being in school. However, when we mentioned it yesterday it seemed like it was really kind of a serious issue. Like if Phil gets a sore throat or a runny nose, it's a big deal. And if someone else in the house gets sick, he needs to stay away from them. With this being the first year of preschool we're anticipating coming home with every little germy that's sneezed around and normally, hey suck it up it comes with the territory but now it's much more risky and so... we have some decisions to make. While we figure that out I'm being diligent with vitamins and probiotics and preventative homeopathic measures and hand washing and prayer so we'll see what crops up, if anything. Our P.A. also stressed the importance of a clean house, at which point Phil and I looked at each other and exploded with laughter and Phil suggested we ask his mom to move in.

Let's see, what else. Oh yes, Chemotherapy. Phil's first infusion is on Tuesday. This is where we will go to the infusion center and he'll sit there with a needle in his arm and get lots of fluids, then he'll get a quick IV push of a chemo drug, then lots more fluids. The process should take two or three hours. And I'll come with him to make sure he behaves himself. And also to make sure he feels okay afterwards (they think he'll be fine). The day after infusion is supposed to be the most difficult but everyone is different so we won't really know until it happens. Good thing neither of us is a planner because it's impossible to plan for any of this. The one thing we're planning is to bring our laptops because free WiFi ya'll! And maybe iChat. We are attempting to test and pioneer this technology at the cancer center because apparently no one has done it yet which is hard to believe. Wouldn't it be awesome if, instead of finding childcare for every doctor's visit, I could just Skype in to the appointments? Brilliant.

I got a very cryptic message on my voice mail this morning from a woman at the Revlimid company and she made it sound like Phil was in some kind of legal trouble. I'm not sure if I have the wrong number, but I'm trying to reach Philip. I can't say his last name because of confidentiality but if you know Philip, you know what this is about because you are very close to the situation and I'll need to talk with you too. Thankfully I knew this call was coming or else I'd be concerned. Basically Revlimid is a cousin of Thalidomide and if you remember the horrors associated with that drug in the 50s/60s you can understand that the company now has to make sure certain precautions are taken so that history doesn't repeat itself. So Phil and I get to answer lots of personal questions and vow in front of God and country and Celgene Corporation to use contraceptives or be celibate throughout the course of treatment so help us God. Then people throw rice at us and we eat cake. It's beautiful.

I think that's about all that's happening on the myeloma front. If you're coming here from The Michigan Daily please feel free to hang out and browse around. Try not to make a mess though, because I'm not cleaning today. (see paragraph 6.) Oh, we'd also love if you'd leave a comment so we know you were here.