Thought I'd give those of you who don't have a lot of time to read my blog but want an update I'd just give you what my last week was like, day by day!
Monday, May 7th: I had scheduled, for my new drug study I'm doing, (see post after this one for more details) a bone marrow biopsy (BMB). A full body scan. Skin biopsies. Lots of blood taken.
When I got to the office where my BMB was to be performed, I discovered that because I had drank about 3 oz. of water to take my meds, I had to wait FOUR hours before the procedure could be done! Really! The rest of the day went as planned. However, I did not get to eat anything until about 3:00 p.m.
Tuesday, May 8th: This day I had my head/neck C/T scan. And an echo gram. When they were doing my heart, they saw something funny. And had to do a dye contrast. Thus I had 3 dye contrasts in 2 days. YUK! Ok, I was worn out by this time.
Wednesday, May 9th. I had a Dr's appt (ear/nose/throat) in Westlake. I was not feeling well and was running a fever. But, I needed to go. I also had 2 mystery shops (very easy ones... take less then 10 minutes to fill out the forms so I don't mind doing them... ). Keith was playing tennis and needed me to take the kids to Youth group and since my mystery shops were on the way back home, I agreed. Then it turned out that Keith's game got canceled. However, I said I would still go since I needed to do my mystery shops. Ok, so we are in the car and exiting off of 45th street and we hear this awful noise. We pull into Hancock center and I've got a flat tire! Long story short, I have Keith come and deal with van (and with the wonderful help of our great youth leader, Jesse).
So I take off in the Toyota. I do my first mystery shop at What-a-Burger. Everything goes great, I even got to order my favorite meal... the chicken strips! So I'm driving to my next shop and I'm at the corner of 290 west and IH 35. I'm in the right turn lane when suddenly I'm rear ended! Yes, you got that right. In the Toyota, AGAIN. Keith says he's just going to paint a target on it. Unfortunately, this time it was NOT Progressive but some absurd insurance company. So far we've talked, we have had an estimator come out, but I've not heard what they are planning to do about our car. And No, I did not call the police. I was so tired and felt so yucky! I'll keep you updated on the poor little car.
Thursday, May 10th - I don't even remember what I did that day :). Probably stayed in bed and tried to get with the insurance company. Oh yea, I got a call from Dr. Duvic's office and was told my potassium is too low for me to be a part of the new drug study! So in order to get my potassium up I've been gorging on bananas, potassium pills, etc. Please pray that it goes up otherwise I won't be able to participate. But here is the kicker, all those tests I did on Monday and Tuesday, you have to have the tests done within 2 weeks before starting the drug. So if my potassium goes up in say 3 weeks, then I have to do all the tests over again. I DON'T THINK so! I'll take that as sign from God that I'm not suppose to do the LDH, etc. drug study!
Friday, May 11th - Social Security called and said I had been approved. To read more about all that you can click here: Renee gets approved
So that was my week. This Sunday, 5/20, we go to Houston for a week of the new drug.
May 15, 2007
Sleeping, Flaking and a new adventure
Some of you may be wondering what have I been doing since I retired on March 30th? Well, sleeping a lot. I usually don't get up before 11 am! Then I either wash a load of clothes or clean the kitchen and take a nap around 4pm. I have no idea how I worked the last 2 years. Ok, no comments please!
On my last appt. with Dr. Duvic, she really expressed how unhappy she is with the way I'm responding to the BXC1777 drug study. So I decided to try a new drug study... LBH589B. One thing this new drug is suppose to do is stop the ITCHING!
Before I actually start taking the drug, I must first be off any chemo for 30 days. So I took my last BCX1777 April 22nd. So far the only changes I can tell is my skin is really, really dry. I wake up in the morning with dry flaky skin all over my body. It doesn't matter how much lotion I put on, in an hour I'm very dry again. And of course the itching. Once I start itching I can't stop. It feels so GOOD to scratch! This itching is different than ever before. I feel like I have to scratch deep into my skin, to get into the inside of my lymph nodes. Since it the stupid lymphoma that causes the itching!
On May 6 and 7, I will go to Houston for tests. I will have a full body/neck/head CT scan, another bone marrow biopsy (which I decided this time to be put under sedation) and probably a couple of skin biopsies. In addition to all that I will have an echogram done. I think that's the correct term. This new drug can mess up your heart.
On May 21st when I take my first dose of the drug, I will have an echo done every 6 minutes. Yep, you read correctly. I think I have 10 of them done. I will be in Houston that entire week. I have Thursday off however from having to do tests! Fortunately, the drug company is paying for our hotel. Then after that week, I have to go to Houston every Monday and Wednesday for the month of June and then every Monday for as long as I'm on the drug . If anyone wants a day away from Austin, I'd love the company!
As I look at all this, I'm beginning to see that maybe a bone marrow transplant may not be all that bad! However, Dr. Duvic told me that two people had been put in total remission on this new drug, so I'm praying that will happen to me and the BMT will not be an issue.
On my last appt. with Dr. Duvic, she really expressed how unhappy she is with the way I'm responding to the BXC1777 drug study. So I decided to try a new drug study... LBH589B. One thing this new drug is suppose to do is stop the ITCHING!
Before I actually start taking the drug, I must first be off any chemo for 30 days. So I took my last BCX1777 April 22nd. So far the only changes I can tell is my skin is really, really dry. I wake up in the morning with dry flaky skin all over my body. It doesn't matter how much lotion I put on, in an hour I'm very dry again. And of course the itching. Once I start itching I can't stop. It feels so GOOD to scratch! This itching is different than ever before. I feel like I have to scratch deep into my skin, to get into the inside of my lymph nodes. Since it the stupid lymphoma that causes the itching!
On May 6 and 7, I will go to Houston for tests. I will have a full body/neck/head CT scan, another bone marrow biopsy (which I decided this time to be put under sedation) and probably a couple of skin biopsies. In addition to all that I will have an echogram done. I think that's the correct term. This new drug can mess up your heart.
On May 21st when I take my first dose of the drug, I will have an echo done every 6 minutes. Yep, you read correctly. I think I have 10 of them done. I will be in Houston that entire week. I have Thursday off however from having to do tests! Fortunately, the drug company is paying for our hotel. Then after that week, I have to go to Houston every Monday and Wednesday for the month of June and then every Monday for as long as I'm on the drug . If anyone wants a day away from Austin, I'd love the company!
As I look at all this, I'm beginning to see that maybe a bone marrow transplant may not be all that bad! However, Dr. Duvic told me that two people had been put in total remission on this new drug, so I'm praying that will happen to me and the BMT will not be an issue.
May 10, 2007
We'll get this expedited...
So said the very nice Social Security Disability case worker. Less than 51 minutes later I was assured that my first payment would be September. I know of a few of you who have applied for SS Disability. You have to fill out tons of paperwork. Which I did months of ago. Thus, I was so happy, since I had been denied at that time, I didn't have to fill out all that paperwork again. And who said that there's a lot red tape with the government? 51 minutes... :)
I was told, as everyone who gets SS Disability, you HAVE to wait 5 months from the date you apply or your last date of work.
Update: This past week (May 7th) I received a phone call from Social Security and I have been approved! And not only that but the children will also receive a stipend (is that the correct word?) Anyway, between what I will be getting and what we'll receive from the children, the total will be about $400.00 less than was bringing home. God is INCREDIBLE. I have to confess the way I've been feeling lately, I'm still to drained to anything to help make up any salary. (I can make up to $900.00 a month without penalty.)
Oh yea, the 5 month wait? Well that translate into like the 3rd Wednesday in October :)! They always pay a month behind.
Yet God is so incredibly good!!!
I was told, as everyone who gets SS Disability, you HAVE to wait 5 months from the date you apply or your last date of work.
Update: This past week (May 7th) I received a phone call from Social Security and I have been approved! And not only that but the children will also receive a stipend (is that the correct word?) Anyway, between what I will be getting and what we'll receive from the children, the total will be about $400.00 less than was bringing home. God is INCREDIBLE. I have to confess the way I've been feeling lately, I'm still to drained to anything to help make up any salary. (I can make up to $900.00 a month without penalty.)
Oh yea, the 5 month wait? Well that translate into like the 3rd Wednesday in October :)! They always pay a month behind.
Yet God is so incredibly good!!!
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