January 15- Blood Results

Today I went for my blood draw at the clinic but with the temperatures starting out the day at a -28 I told the lab tech that getting my blood may be a little difficult. I went for the first time on my own. We didn't have school for the second day in a row and to be honest I got caught up playing Super Cow on the computer and was a little late for my appointment. Craig was busy writing his sermon and lost track of time as well so it was just easier if I went alone.

It wasn't as scary this time, going to "The Cancer Center." I knew where I was going and what was going to happen this time. The people there are very nice, friendly, and helpful. I didn't have to hardly wait which was good cause their TV reception was terrible. Guess it was cold too. I told the lab tech that I would like to have a copy of the results and she said she could do that with a little hesitation. They only took one vile this time. Whoo Hoo!!

The lab tech had me sit in the waiting room, still no good TV reception but it was only for a few minutes. She came out holding my test results and proceeded to tell me that my white count was down considerable to 104.0, and my platelets were down to 432 ( I am almost normal there) but that my hemoglobin was below normal at 8.2 (Normal being 12-16) and she would have to talk with Dr Sangha and check with him if he wanted me to have a transfusion. I don't know why but the word transfusion kinda scares me. She left and I was in the process of trying to call Craig when Dr Sangha came out and said everything looked good and yes my hemoglobin was low but that I was young and it should be OK for now. Then he left. I got my test results and I left too.

I called Craig back to tell him what was going on and Craig remembered Dr Sangha saying that he usually waited till the hemoglobin got down to 7 before he starting doing transfusions. That made me feel some better.

OK, now for those of you that REALLY know me, you know that I am a very warm blooded person. Even in the winter time I can usually get away with one layer and keeping the house at a comfortable 65. Well, this past week especially I have been down right COLD and it stinks but now I know why. I don't have any blood circulating through me to keep me warm. I now have to join the ranks with my sister-in-law, co-worker and many others that I have teased for years about them being so cold and put the extra layers on. Sorry ladies for all that teasing. It is true, you will now see me wearing three layers on top and pants with the possible long johns on underneath, a pair of thick socks and great grandma Ferguson's slippers on.

So for now that is our update where we are at now. I did think the Dr was going to be checking my Uric Acid levels too but don't see that on my test results so will have to call about that tomorrow too. Also after my blood draw I did some running around. First, to pick up my prescription of Cymbalta. For those of you that don't know about two years ago I had a panic attack and found out that after several more similar attacks that I was struggling with Depression. This is something I think should be talked about more. It is nothing to be ashamed of. If you think you may be struggling with depression I highly suggest that you talk with your doctor about. There is nothing wrong with being on medication if it helps. Anyway, for the first time when I picked up my prescription it didn't cost me anything. Our deductible was met and for the rest of the year it wont cost me anything. Pray about this as we are still struggling to understand our insurance. Especially for Craig.

After I picked up my prescription I went to Walmart to pick up a few things and as I was there Dr Sangha's office called to tell me that a Dr Singrich, or something like that, from Iowa City was going to be following me. OK, I have no idea what this means he will be following me and not sure I want to go there. Dr Sangha's nurse was gone already and this lady was just relaying the message. I said I would call the nurse Friday. Then I can check on my uric acid too.

Then later in the night I received a a call from the American Red Cross asking if I could donate blood. Poor lady if she only knew I was the one in need of blood. After politely informing her that I had been recently diagnosed with Leukemia I asked her to take me off their list.

Well, now you know what we know. I want to say, "Thank you, Thank you, Thank you, for all your cards, and emails. I have truly been amazed and blessed by all of them and even from people I don't even know. It has been a big encouragement."

The Cost of Life

In a conversation yesterday with a friend we discussed the topic of insurance and prescription costs. It is never fun finding $5,000 at the beginning of the year to pay an up front deductible before your benefits kick in. (Jody's prescription would be $230/day) However now that we have met our deductible, the rest of the year "should" be free. (Praise the Lord for that darn expensive insurance)

During the conversation, I quickly turned our direction toward the three choices we had. One, we could find the money and get the needed Gleevec that is the "Miracle" drug as the doctors call it. Two, we could decide it costs too much and opt for the "Old" treatment drugs. Three we could ignore the Doctor's diagnosis and pretend that Jody did not have this thing called CML. Now these last two scenarios really did not leave us any other option. We would be fools to choose a treatment plan that offered a "two year death sentence." And we would be fools to choose to ignore the wisdom of one who is there to care for us. So option one was the only way we could imagine. It really didn't matter what the cost, we were going to give everything to attain the "miracle" we needed.

As a pastor, this quickly translated into a spiritual analogy. Of course we all know that we are sinners and that our sin has gifted us with a death sentence. There are several ways that we can proceed of course.

One, we can seek out the "miracle" cure. This cure for sin as we know is only in the love, grace and sacrifice of Jesus Christ. And by faith in Jesus we gain the "miracle" of life everlasting.

Two, we can try things the "Old" way. We can try to be good enough to get to heaven. We can try to do enough to outweigh the sin in our life. But again scripture tells us that the only way to overcome sin is through Jesus, so I see this option without Jesus as a "short term death sentence" and no real option at all.

Finally, I guess we can ignore our situation all together and believe that there is no such thing as sin, no such thing as eternal life, no such thing as God. But who would do such a crazy thing to risk their life and future by not at least investigating the diagnosis and the hope of a miracle cure.

We chose option #1 and we hope you all will do the same.
In the Love and Grace of God.

First Cancer Center Visit

Well it has been two weeks now since Jody’s diagnosis and although not a lot has changed it feels like the world has changed; everything looks different. We walked into the “Cancer Treatment Center” for the first time. It was harder for both Jody and I than we thought it would be. Just putting the title on it once again brought the reality fresh into the center of our reality. We felt out of place, uncomfortable, like everyone was looking at us. We were well under the age of others around us, and although cancer is not fair when it enters anyone’s life it seems disproportionately unfair when one is so young. Afterwards we went out to eat at “Red Lobster” and then and new pair of pants for Jody at Wal-Mart. (All the While I was on the phone with Insurance – bleh)

Here is the basic update info for all of you who have been holding your breath.

We now have an insurance case manager who is assigned to us. This means that as we have questions she is supposed to help us and will be the one to make decisions about extra treatment and care. She has been on the Gleevec now for 5 days. She has virtually no side effects that we have noticed. I am the one sick from already meeting our yearly family pharmacy deductible. ($5,000) (Laugh for me – I can’t yet)

Her white cell count has come down a lot – only 185k now – this is good, but she still has a long way to go to get to the recommended 5-10k. Dr. Sangha said she is 98% abnormal – I guess we all had some suspicions about that. (laugh with me this time) This means that a majority of her blood is composed of the Philadelphia chromosome that is the key to identifying CML.

We asked a lot of questions

How common is this? - Not very

Do you have any other patients? - Roughly 5-6 in the area

Working at the school? - Just wash hands regularly.

How to read blood count numbers? - Blah, blah, blah – funny thing is I think I got most of it

What to expect and plan for in the months ahead?

First two months just getting her levels back to normal. Sometime after that we will get a consultation in Iowa City for info about Bone Marrow Transplant. As long as the Gleevec is keeping her cells in check this is probably not the course of action to pursue. Possibly this will lead to seeking matches through siblings for future.

How often will we need to see you? - Every week in the clinic for blood tests – keep track of levels. Then once per month to consult with him about any changes we notice or the blood levels indicate.

Can we get copies of all Jody’s tests? - Yep – and they are on file.

Many others…

We do feel comfortable with Dr. Sangha and what we are learning about Jody’s condition. We are “Living Victoriously” believing that we have already overcome this. By looking at Jody you would not be able to tell that there is anything wrong with her. She is coping with all this very well, but still fights her emotions on occasion when the overwhelming reality and her imagination gets the better of her. We have been walking together on a regular basis in the mornings and our nightly prayers have become an essential part of the day. I get to cuddle more than ever, and she just treats me like her big teddy bear. You know sometimes it takes devastating news to remind you how much you love someone. I pray you all will take a moment to tell the people in your life that you love them, and remember Jody and I love you too.