Dr. Visit

I had my appointments with Dr. Shires and Dr. Strauss today and they were not as encouraging as I had hoped they would be. The PET scan that I had on Friday was done with a different machine so it was hard to compare it to the scan I had done a month or so ago. Dr. Strauss had hoped that the tumors would not "glow" as much as they did on this new scan. He was hoping that they would "glow" less which would mean that the Gleevec was working really well. There could be some discrepancies due to the different machines and he was going to take it down to another Dr. who had a computer that could allow him to view both PET scans at the same time and get a clearer picture. Dr. Strauss and Dr. Shires were going to confer tonight (as well as with a Dr. from Baylor who would do the Cyber Knife procedure) which leads me to the visit with Dr. Shires. He indicated that we would have to do the Cyber Knife procedure on the tumor in my liver because of where it was located. It is sitting in the most important spot in your liver. Just between the vena cava (the main artery in the liver) and the bile ducts which is apparently the whole function of the liver and it is hard to get to on top of all that. It scares me a little bit that this is in such a highly sensitive place and Dr. Shires even admitted today that it would be a "bloody surgery." For a surgeon who regularly operates on major organs, I cannot imagine how "bloody" it will be. The Cyber Knife would send extremely high levels of radiation into a tiny area that would (hopefully) shrink the tumor enough to make it easier to remove. That golf-ball sized tumor makes me incredibly nervous and is probably the scariest of all the things we've had to deal with so I really don't spend a lot of time thinking about it. The tumor on my spleen is only the size of thumbnail and could be removed easily along with my spleen and maybe a few inches of my colon. According to Dr. Strauss, the most likely next step right now would be to take the Gleevec for a few more weeks and do another PET scan to see if maybe it just needed a little more time to work. Dr. Strauss will be calling me tomorrow after he and Dr. Shires communicate this evening to let us know a little more. It is a little disheartening because I had really hoped that we would go to the Dr's today and learn that the Gleevec was working very well, the tumors were responding normally, and then they would see me again in three months to figure out when the tumors could (easily) be removed. We were not told that things are hopeless, or that surgery would need to be done immediately so that is something. Keep us in your prayers and pray that this is just a small bump and that the Gleevec will kill these tumors and make them easy to remove and NEVER come back.

P.E.T. Scan Today

Jordan will be having a P.E.T. scan performed today starting at 12:30 p.m. The purpose of this scan is determine if the Gleevec that she started taking two weeks ago today is working to shrink and kill her three existing tumors. The results will be known (to us) next week when Jordan visits the oncologist again in Dallas with this scan in hand.

Please pray that the results will be favorable.

Brad

Cute Kids and A Way Cool Contraption

I have always wanted to dress all of my children in matching clothes. Having my children 4 years apart and different genders pretty much makes that impossible. Last night for church I got as close as I'll probably be able to and they were so cute I just had to take a picture!



Phoebe "almost" smiling.



I have discovered the greatest baby product! It is a Podee Bottle and it's function is to be a hands-free baby bottle. I saw it first on Oprah where a woman with four babies could feed all her babies at once. I thought, "Wouldn't that be great for traveling?" It has a pacifier top with a tube that runs down into the bottom of the bottle so the bottle doesn't have to be tilted up. I found it online and it is great for people who travel on long car trips alot...and we do! Phoebe is demostrating.

Be All You Can Be

I was feeding Phoebe this afternoon and someone knocked on the door. I put her down to answer the door and asked Eli (who was dressed in his "army man" Halloween costume) to keep giving her the bottle. He looked at me and said, "Army mans don't feed babies! They have guns!" What was I thinking?!

The joys of a wood floor!

Better Days

I have been feeling better the last few days. The Dr. said that it might take a few days for my body to get used to the Gleevac, but then I would feel back to normal...maybe a few small side effects, but nothing major. He also told me it was fine to take some Tylenol when things were really bad. Knowing that makes me feel a whole lot better! Yesterday and today have been manageable so I am feeling alot more optimistic about my treatment. I will take Gleevac for about another week and a half and then I have a PET scan and go back to Dallas to see Dr. Strauss and Dr. Shires on the 31st to find out if the medicine is working and what the next steps will be. Of course, that Thursday just happens to be the day before First Monday in Canton. What a coincidence! :)

Small Setback

I started taking the Gleevac on Friday night. It wasn't very exciting, just a plain ole pill...looked like a vitamin. Saturday my back and hips started to ache a little bit, but I assumed it was because I've started to work a little bit. Sunday it was worse and by lunch on Sunday it was so bad I was feeling a little queasy and had a hard time walking upright. The pain was radiating out from either side of my spine and my hips, knees, and shoulders ached like when you have the flu. I spent the rest of the day in bed with heating pad because the literature on Gleevac said not to take any over the counter pain medication. The bone aches are all part of the side-effects of Gleevac. Basically, since it works with my immune system to make it recognize that the tumors are actually bad and kill them, my immune system is out of whack. Minus the fever, chills, and stomach ache, I feel like I have the flu. It is very frustrating and a little scary. I'm frustrated because I had finally started to feel really good again. My strength and stamina were back and I could do all that I had before surgery. Now I've started taking Gleevac and I'm having to "take it easy" again. Unfortunately, the Eli and the laundry don't "take it easy" with me. I'm scared because I don't want to feel like this for two years (the estimated time Dr. Strauss thinks I'll be on Gleevac). I know there are people who live with chronic pain, but I don't want to be one of them. I don't want to be the kind of mom who is always in bed or on the couch or who can't take vacations or play outside or go to the park or fix dinner. I also realize that so many times in life, we don't get what we want. God has been our strength and shield so far, and I know He will continue to be...I just have a hard time with trust. I do feel better this morning and was able to go to Wal-Mart with two children in tow (we needed that milk!) so maybe it will only be a passing side-effect. I pray that this is just a small setback.

On a more cheerful note, here are some pictures of my precious family!

HUGE Blessings

I have been feeling very blessed today. I know that I am ALWAYS blessed, but sometimes it just seems to be more apparent than usual. We are finally getting all of our ducks in a row concerning the Gleevac prescription. It took a letter to document that this was only course of treatment, a meeting with a board to approve payment of the Gleevac, getting Dr. Strauss all the numbers for the various pharmacies and agencies that will be supplying the Gleevac, and finally for Walgreens to actually get the Gleevac at the store. Apparently, it is not used enough to actually keep at the store. That has all been going on the last few days. The pharmacy called yesterday to tell us the prescription is in, but that it was a $600 co-pay! We were a little shocked because our insurance had told us it was going to be only a $50 co-pay. It was all a misunderstanding because they had filed it with our old insurance that we had through Brad's law firm. With Brad's new insurance from his new job, our co-pay will only be $50 a month. The actual price of the Gleevac for a month is $3400! Here is where the blessing part comes in. Brad's new job (the one he was offered the night before my surgery on March 9th) has insurance that will cover this new drug that will (hopefully) make it so that I never have to have these cancer tumors again! We had been told that I will probably be on Gleevac for 2-3 years and I cannot imagine paying $3400 or even $600 a month for that long. Again, we have been taken care of. God is good.

I haven't actually picked up my prescription yet because the woman in charge of benefits at Brad's new job has to call Walgreens and give them our new prescription info. We are getting a card in the, but it hasn't come yet, so she's just going to call and get it all worked out. I should have it by tomorrow and then I'll start taking Gleevac. It feels good to know that we are finally getting treatment started. I'm only a little worried about side-effects because all the literature says they are extremely mild for a chemo drug (headache, nausea, fatigue, etc.). I'm only even worried that much because it is just an unknown. I don't really know what to expect. I'll post more about it when I know! :)

A New Look

I have finally decided to change the look of our blog. Not a huge difference, but I decided it was nice and "summery." I don't really feel like it is almost summertime because it is still pretty cool here. The cold weather has really hung around this year and I think I am getting a little depressed because of it. By the end of August, though, I'll be depressed because the weather is still so warm. Why can we not just be content in the moment?

I've spent a lot of time contemplating why this whole obsession with SpiderMan really bothers me. This would be Eli's obsession...Brad could care less about any superhero. It is a disturbing day to realize that you know more about superheroes than your husband. It is just wrong. Thanks, Ben. I can't really put my finger on why it bothers me so much that Eli is fascinated with SpiderMan. Is it because the movies are so inappropriate for an almost four-year-old? Maybe. I cannot even imagine letting Eli watch any of the SpiderMan movies. We have friends that see no problem with their children seeing the movie. I don't think they are worse parents for it and most of them I really admire as parents. It is a decision Brad and I have made for our family and we really don't care that Eli will not get to see some of the movies his friends are seeing. Is it because I feel like I am being bombarded with SpiderMan propaganda? Maybe. I was trying to find something at Wal-Mart last night for Eli to take to his gymnastics party. I did not want to get anything with SpiderMan on it and I got so frustrated looking that I just left with nothing. (I ran to Walgreens this morning for some Ring Pops that supported absolutely no characters.) I could buy fruit snacks, juice boxes, chips, cookies, granola bars, fruit roll-ups, t-shirts, underwear, or even snugly baby blankets! Everywhere I looked there was SpiderMan. I think my reason for being so anti-SpiderMan has really nothing to do with SpiderMan at all. I think I am resisting it because it means my little boy is growing up. He isn't interested in little boy things anymore and I am mourning that loss. I realize that I cannot stop the hands of time and that everyday is one step closer to releasing my precious boy to the world and his own life and decisions. SpiderMan represents that loss. I want to keep Eli little forever and yet I know that is impossible. So, I am trying to make my peace with SpiderMan. At some point, I will probably wish that Eli were still "into" SpiderMan and not even more grown-up things. At least it is not the Teenage Mutant Ninja Turtles...talking turtles just freak me out a little bit.

Before you think that I have forgotten to rotate a picture, you need to know that "SpiderMan Fever" has infected our house. I'm not sure how we caught it, exactly, since Eli has never seen a SpiderMan movie, but he is fascinated with SpiderMan. He has been pretending to be SpiderMan all over the house the last few days and it is amazing how an almost four-year-old can turn an average house into the tall buildings that SpiderMan scales. He actually moves like him! This is Eli pretending to crawl on the wall. While I don't want to promote the whole superhero phenomenon that little boys seems to find irresistible, I was impressed with his ingeniousness. Gravity is not going to hold this boy back! If he needs to be SpiderMan, then, by golly, he'll find a way. I just wish sometimes it didn't involve him leaping from my couch to my living room chair. :)