Thursday, October 1, 2009

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. 

16 comments:

Lesli said...

Just want to leave a hug and let you know we are praying!

- Lesli and the Gang

Steph - the 313 said...

Our prayers are always with you guys. Please please let us know how we can help.

Baj Family said...

Thanks for the update. I love your writing style and the fact that Phil may have flexed!

amy said...

cassie, it would be a crime against humanity if you don't write a book or at the very least become a writer for tv and or the movies. your ability to convey the humor and pathos in a situation is pretty incredible. that was a really long side note to what i intended to say which is that we are both praying for phil and you and your whole family. praying the chemo works extraordinrily well, that healthy cells are protected and cancer cells obliterated, that all of you including ocean develop a teflon skin to which germs are unable to adhere and that your spirits are fortified daily by divine infusions of love, comfort and the continued ability to find things to laugh at.

Jennifer said...

You are hilarious. I got a laugh out at least once during reading this blog. I remember the celegene questions well. My favorite was have you donated sperm.
Good luck with the Ocean decision. I was very grateful that we didn't have children when KG was going through chemo. It would have made it harder. You will make the best decision for all involved. Good luck and kick some myeloma butt:)

Jody said...

Phil & Cassie we'll keep you in our prayers. I have vivid memories of of trying to keep little ones quiet while my chemo taking husband tried to rest.Almost 11 years ago! Take care.
Jody

C said...

Someone earlier (amy, i think) said it best. You need to be writing about this constantly! Whether that turns into a book or whatever may be irrelevant but your posts are awesome to read.

Also, call me! I tried calling you back a couple weeks ago and you didn't answer. WTF, sis?!?!

Sincerely,
Your big brother

aiacco said...
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Phil said...

Chip- re: "I tried calling you back a couple weeks ago and you didn't answer." Do you know your sister? First, she is abusive, but now THEY know, so maybe she'll stop. Secondly, you are more like to get Myeloma at 28 than get a hold of Cassie via her cell. Given that you are older than 28...chances of you getting a hold of her are very slim bro...

Roobeedoo said...

I just found your blog via TK's links. My husband has MM too. Particularly enjoying your take on the Revlimid phone call!

Jennifer said...

Still learning about MM. My sister is having a bone scan and echocardiagram (prob killed that sp but the test to see if damage has been done to her heart). She already had a bone marrow biopsy last Friday. I had read about MM patients having a harder time fighting off infections. That is interesting with little ones in the house. It sounds like you are making educated decisions though on what is best for your family.

Amy said...

Thanks for the updates! Following along and praying for you guys. And yes, a butt shot would help. :)

Silver Pansy Designs said...
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Silver Pansy Designs said...

Found your blog through a link from a Google alert on multiple myeloma. You have a wonderful positive attitude that is a boost to all of us. Will be thinking of you as you undergo your transplant.

Karen

sd2912 said...

I had the stem cell transplant 4+ years ago and am doing quite well. It's not what I would choose to do, but it is certainly "do-able." (Food tastes strange, but I actually gained weight. I was very weak but managed to ride a stationary bike briefly each day. I was at the IU cancer center where Lance Armstrong had been so riding a bike was almost manditory.) Sounds like Phil knows how to relax through the process, and this is 99% of the challenge. Good luck; you're in my prayers.

julie said...

i'm here! you don't know me but i love you and am praying for all of you!