Much Love & Itching!

Well, it's been awhile since I have written but this summer has been busy with the move and all but you can hear all that in the "hope to be" Christmas Letter. ( I can dream) Had appointment in Iowa City today. It's a little different driving from this direction. Takes about the same amount of time,maybe 15 minutes more, but it is worth it when you like the doctor and people there, even if it may seem a little extreme. Hence the title "Much Love".

I have mentioned it before the many people you see when you got to Iowa City as far as just getting checked in. There is the check-in ladies, the lab crew that draw your blood, the lady that meets you to take you vitals and ask questions, the lady that comes and asks you about the medication you are on, the Nurse Practitioner/ Dr in training that comes in and checks you over and asks you questions about how you are actually doing and if you have any questions.They do a little exam and then are done. Next Karen comes in who is the trial drug representative. She goes over the blood work, gets you your next 3 months worth of medication and takes what you have left. Sets up appointments and answers any questions or concerns we may have. When she is done or as she is about done then Dr. Gingrich comes in. So a total of 7 people I go through before I am even really seen by Dr Gingrich and there isn't much left to go over but it is still a joy to visit with him and hear what he has to say about what is going on with me. He is truly a wonderful doctor.

Today Karen in going over my blood work tells me that my white count is up and so is my liver enzymes. They are accounting this probably to the prednazone, which I am on for my poison ivy. I say probably because they are sure it accounts for my white count but not totally the liver. The Tasigna/Nilotinib has a tendency to raise your liver levels and this is something they always watch. I will have my blood recheck in a couple weeks here to check and see how they are doing. The normal range is 0-20 and mine was 53. My white counts was up just a little with ranges from 3.7-10.5 and mine was 13.3 so just a little high. My test results from my last visit still weren't down to the zero where they would like for my leukemia. Depending on how my results are this time (it will take up to 3 weeks to get results) if it hasn't gone done then, they will up my dose from 300mg to 400mg.

Ok, now my poison ivy. So three weeks ago coming this Wednesday it was finally cool enough that I was able to concur my weeds in my front flower bed. This is not a very small flower bed and it had many over grown weeds. I never really knew exactly what all was in the flower bed since we moved in but did recognize some hosteas and so just went with keeping those and the rest went. Well, two days later I have a few patches on my forearms that are itching, the next day some on my legs. I go to Doctors here in Johnston for a first time visit and she says poison ivy. Uhgg! At the time it wasn't that bad, with just some spot like I said, on right forearm and a little on my leg. Well after about another day I had more on both legs and both arms. But it was the weekend and knowing it was poison ivy just got some poison ivy wash and cream from Walgreens and used that 3-4 times a day for some relief. By the end of one and a half weeks I now have it on my both arms, legs and chest and creeping up my next. I start to panic now and am sooo uncomfortable! But, it is Labor Day weekend so end up going into Urgent Care. The doctor there was very nice but was concerned about the medication I was on with my leukemia that she suggested a different poison ivy wash which she said would work better. Well, I think it made it worse because I received NO comfort from it. Now it has been two and a half week and there is now some on my back too. Back to the doctors I go where on Friday of last week I finally am able to get on Prednazone. I am finally starting to get some relief. The cooler the weather the better off I am. I have given into the itches so will probably have some scars but hey. I NEVER thought about having poison ivy in my own flower beds. I hadn't really ever heard of it before so I wasn't even looking for it. Now that I look back we have found a couple small plants. Now I just have to get rid of it. So that is my story and I'm sticking to it. (hahha)

Things are going well here in Johnston, Iowa. The kids are getting involved in school. Making friends is no problem for Hanna and it will come for Nathan. He involved in French club, Jazz Band, and Soccer so some way or another he will make some friends. Craig is staying busy at the New Hope Church with outreach ministry stuff and I am busy here at home with house stuff. I have applied for several jobs but have honestly enjoyed the days home alone but miss the work too.

Some of you may have seen the special on ABC, NBC, and CBS the other night called, Stand up to Cancer. First off, I think it was amazing that all three networks got together to do this second I encourage everyone to donate to this wonderful cause. All the proceeds go to new drug trials and cancer research. We were told today from Dr Gingrich that this test drug I am on, Tasigna/Nilotinib is now on the market and has basically replaced the Gleevex because it is working so well. He also told us that new studies they are doing that he is excited about is that people who have been on the Tasigna and have gone into remission, after a period of time they were taken off of it and 50% of the people started showing signs of leukemia and went back on the Tasigna with still great and fast response. The other 50% who went off it and were able to maintain the normal numbers after 6 months have been able to stay off of it so far. These are encouraging thoughts and words. What once there was no cure for now has a drug that can put you in remission with the possiblities of eventually getting off it too. This is great news but they wouldn't be able to come up with it with out the funding. Go to www.standup2cancer.org and make a donation and help some a life. You never know who might be saving.

An UP-lifting Experience

UP-lifting experience" is what I had June 2 at about noon. I had to be at the hospital at 10:30 and was taken back to surgery probably about 12:30. I cant say I remember much of it or any of it for that matter. I have a hard time remembering any of it up to about 6:00pm. Which is a good thing right. You don't want to remember what happened during surgery. Dr Kaaki said everything went well with the hysterectomy and he worked on the vaginal area as well as the rectum area. That all went well but while he was working on the bladder and suturing it up (Hence the uplifting experience) he nicked my bladder and so then had to do some extra repair on my bladder and now instead of only having a catheter for two days I will now have it for 10 to give my bladder time to heal. That part really stinks. I wasn't thrilled about having it two days but 10 is the pits. I have a new feeling of empathy for those who have to wear one on a daily bases.

I came home from the hospital about 1:00 yesterday. I have to take antibiotics as well as a stool softener and a couple pain meds. Speaking of which, "Hey Craig, I need a pain med."

I slept well last night. I woke up every time I had to roll over but was able to fall right back to sleep. Was up for a little while at 4:00 to take some pain meds and then sat in the recliner thinking I would read some but only got about 2 pages read for I headed back to bed.

I had a little concern with the redness of my urine in my bag but just talked with the nurse and she checked with the Doctor who said that would be normal with the suturing of the bladder for a while.

My biggest prayer right now is the bowel movement. I am going to need to have to have one, more then likely, in the next 24 hours and I am NOT, repeat NOT looking forward to that. He did quit a bit of work down there too and so the first time is not going to be fun.

So that is where I am at right now. I actually feel pretty good all in all. I have kept in contact with my Trial Drug lady Karen and she has advised me to stop taking my Tasigna/Nilotnib til after I have finished taking the antibiotic. Thank you all for your prayers during surgery. I greatly appreciate it.

Battle of the Buldge

I wasn’t sure I was going to write about this or not but decided I would share. You never know when it might help someone else going through the same thing. Well, when I titled this Battle of the Buldge I truly mean it. This is something I have actually been dealing with the past almost 2 years. It is something I went in to have checked on my physical 2008 when I was diagnosed with my CML but didn’t do anything with. So, obviously it wasn’t bothering me to much but more of a concern.

After my physical this year my physician advised me that I see an OBGYN and have it checked. So that is what I did. First let me say Dr. Kacci (pronounced kacky) has the most beautiful eyes I have ever seen! Sorry honey. I had a hard time catching everything he had to say. It didn’t take much of an examination for him to know that I had a prolapsed bladder and uterus. What does this mean? Well, basically that my bladder and uterus are falling and causing a buldge vaginally. What goes along with this? For me it means mostly constipation and occasional leakage of urine when I sneeze or cough. How does this come about? The main cause is from injury during childbirth, especially if the woman has had many babies or large babies (more than 9 pounds) I definitely don’t have many babies but my first born was a large baby of 9 pounds 1 ounce and I had a lot of pushing during delivery. Now let me say right now, DO NOT TALK TO MY SON AND BLAME HIM FOR ANY OF THIS! He is very sensitive and would feel incredibly bad!!!!

This last Monday I had the pleasure of having an urodynamics test done. This measures pressure and volume relationships in the bladder. Let’s just say that it is really hard to pee when you aren’t sitting on the toilet and someone is watching!!! And I had to pee!!!! What you have to do is go in with a full bladder and then sit in this birthing type chair and pee into a funnel which measures your pee and I believe pressure. Then they put a small catheter in you and fill you up and have you also hooked up to a few different wires till you say you can’t hold any more and have you cough a few times (to see if you leak) and then pee again. None of this was painful but annoying that I couldn’t pee without being moved onto a commode both times. Thankfully I had a wonderful nurse who was a great talker and had actually been through this whole process herself.

June 2^nd I am scheduled to have a vaginal hysterectomy and suture up my bladder to hold it in place (uterosacral ligament fixation, A & P repair, perineorrhaphy) along with, a Cystoscopy (looking into the bladder with a scope) ….Craig and I have some questions yet before all of this so have an appointment to meet with Dr Kacci May 25^th to get more information. Craig is concerned about a lot of things like why the total hysterectomy and what about recovery time. Remember, we are moving so are packing and unpacking which will be strenuous. We are looking at moving around the 15^th of June. We also have our United Methodist Annual Conference June 5-8 which I was suppose to go also, but by the sounds of my recovery I will not be up to going even if all we do there is sit.

So that is where we are at right now health wise. I am starting to wonder what is going on. Ok, so I turn 40 July 2 and I am telling you. From age 30-40 it hasn’t been all that great health wise with first my panic attacks and depression to my Leukemia to now this? So I am vowing that 40-50 will be much better. You can read more about the bladder and uterus prolapsed by going to these websites for more info if you would like. Again, I remind you to NOT give my son a hard time about this. He may be embarrassed or sensitive about the whole thing.

http://my.clevelandclinic.org/disorders/uterine_prolapse/hic_uterine_prolapse.aspx

http://www.emedicinehealth.com/prolapsed_bladder/article_em.htm

As far as the move, we are closing on the house May 26^th and are very excited about that. We are all taking the day off and signing the papers, getting the kids registered at schools and then Craig also has a meeting at the New Hope church that night with several different committees to talk about his responsibilities so everyone is on the same page. The leader of new church start developments, Scott Hibben, will be there also to facilitate the meeting.

Craig and I went to “Boot Camp” last week May 10-13 which was very interesting and informative. Not only Craig and I were there but the pastor of New Hope church, Neil Cross (our mother church) and one of the lay leaders, Eldon, was there and so we were all able to hear and work together on a plan for the next 15 months. There is a lot to do in regards to starting a new church but throughout the week I was reassured more and more that this is what Craig is called to do.

You know hind-sight is a wonderful thing and I can look back now and see how God has been preparing Craig for this endeavor. First of all his upbringing was wonderfully Christ based and he was very active starting with his mission trips to Mexico, getting him to work with others to bring people to Christ who lived in difficult situations. Second, there was his Tent Makers training he had when he first got into Youth Ministry. I remember him talking about one even they had to do which was going to a mall and talking with complete strangers and basically asking them if the knew Jesus as their personal Lord and Savior and how uncomfortable that was for him but yet how exhilarating that was. Then there was the Prayer Walking he has done here around the Geneseo Community, knocking on everyone’s doors just to tell them that our church was praying for them. Every step has been to prepare him for this next big step of reaching out to complete strangers and inviting them to join him in starting a new church. Heck, even his BA in Music Theater has helped him as well as his time as a manager at a sporting good store in Colorado. I am so proud of how he has willing stepped forward and is trusting Jesus in this new adventure of his life.

Well, we hope and pray all is well with each and every one of you. Remember to step out and trust God in all you do. Include him from the start in your plans because he may have bigger and better plans for you. Trust Him. He wont lead you astray.

Whose Chicken?

Went to Iowa City yesterday. I have to admit, the trips are getting tiring. Craig and I do try to change things up by trying out new restaurants to us and yesterday was a good one. I was hungry for Mexican and so we went to a place called Eldorado (Not sure on the name) and it was very good. We will go there again.

So my appointment was the usual. My blood draw they only drew three vials instead of the 5-7. Everything looked good. We had Sue this time for the PA. Hadn't had her for quite awhile. Enjoyed having her again. Karen the test drug rep came in and gave me two months worth of my pills and took my old bottles. I have to always remember now to bring what I have back to her to her and she gives me more. I need to have another blood draw later on that I can do in Waterloo which will be nice and I don't have to go back to Iowa City for 7 weeks. Saw Dr. Gingrich of course too. Talked to him about my itchy skin, mostly my chest, back and head. He said the head he wasn't sure about but asked if I had chicken skin. We just looked at him a bit strange. He preceded to ask if my skin looked like chicken skin when their feathers are plucked. Raise some around like a hair follicle. We still looked at him a bit strange and so he lifted up my shirt and looked at my back and rubbed over my skin with his hand. I could tell imediately he had found a "spot"on my left should blade with his finger that he had found something. That was "the Spot". I wanted to say itch it please. He showed Craig what it looked like. Craig says he will never be able to find it again. He said if it gets worse to let him know. It is my head that bugs me the most. We will see what happend the next 7 weeks with that. He or Karen said I could take some Benadryl at night if it keeps me up. I may try some Cortizone 10 on my scalp and shampoo with some T-Tree shampoo. That stuff stinks though.

I have also had some constipation problems but trying to work that out my self with Metamucil and eatting more fiber. Didn't have that problem on the Gleevex cause it cause me to have soft stools several times a day. Ok, enough about my poop.

Just to keep you all informed also, we have found a house in Johnston. Our bid has been excepted and are waiting the little stuff inspection and what ever else. It is an older home, 1969 in an older neighborhood, which is hard to find in Johnston with it being such a newer community. It is on a culdasac so not much traffic through. The previous owners worked with woodwork and so there is lovely wood work through out. Especially the Brazillian Cherry wood floors in the kitchen, dining and living area upstairs. It is a split level home with 5 bedrooms, lots of open space. The kids have there rooms picked out. There really isn't much that has to be done to the house. Huge back yard and big driveway to go along with the huge two plus car garage. We are excited about it. If all goes well, we will close the 26th of May. Then we can take a day and sign papers, and get the kids registered for school. The schools are fairly close too.

Hope all is well with everyone.

Being a Good Girl

Did you know that being a good girl can get you in trouble? Well, it happen to me today. Craig and I got on the road headed to Iowa City for my third appointment in a row when I thought, "I need to take my pills." So like a good girl I took them. About 15 minutes later I was getting a call on my cell phone but I was having trouble getting it out of my pocket therefore I missed the call. I tried calling it back and found that it was from the hospital in Iowa City but I couldn't get the person who called beings they were on an extension. I assumed it was Karen calling to talk to me. About 30 minutes from Iowa City Craig says, " Were you suppose to take your pills today before your testing?" Ah Crud! That was it.

When we got to the hospital and the nurse called me back I told I had taken my pills and she would have to call Karen to find out what she wanted to do. I lucked out. I it was fine. See I was suppose to not take my pills so they could do three EKG's and then take my pills, wait two hours and do three more EKG's. Oops. Karen said we will just do the blood draw and the post EKG's, not a problem. I told her I was just trying to be a good girl and get my pills taken. Actually, it wasn't even her that called earlier on my phone. I still don"t know who it was. God I guess. He was a little late though.

I am still working on a schedule to get those darn things taken. Fasting two hours before taking the pills and one hour after taking them, the night times have been my struggle. We eat so late especially now with kids in soccer till 6:30 at night and meetings starting at 6:30 or 7:00. I take my pills at like 9:00 then I cant have a snack before going to bed cause 10 is just too late and by then I am going to bed. The strange thing is, that I didn't really have snacks before going to bed anyways but it is just knowing that I can't if it is going to be that late. It should be a good thing. I just wont eat breakfast or supper, I need to loose weight for the summer anyway. (Just kidding mom. I wont really do that!)

So it was a shorter day then we expected which was nice. I had asked the nurse if there was a Good Will store close by and she told me about the one close to Coralville Mall. The back of the van had 8 bags of stuff so we dropped them off. Actually, we dropped them off and I picked up one. Meaning, I ended up buying some clothes. Then we had a coupon for Red Lobster and ate lunch and headed home.

On the way home it started raining and there was some lightning too so called the school when we got close and found out that Hanna's soccer was canceled so told them to ride the bus home. It was nice to be home an hour before the kids got home. I got a few things done.

Now I don't have to go back to Iowa City till April 26th to see Dr Gingrich. Things have been going well with this drug so far. No nausea after taking the pills and my puffy eyes aren't nearly as bad either. One thing that has changed...actually two things that are kind of embarrassing. First, my bowels... well, let's just say I could go to the bathroom about 30 minutes after every meal on my Gleevec and I really didn't mind that. But this last week that has changed quite a bit. I do believe this drug has a tendency to cause constipation so that could be a problem. Second, (sorry guys there is no nice way to say this) my boobs have been more sore. I did mention that to Karen this morning and that was a new one to her. It is just mild I guess but I will be...uhmm... monitoring this until my appointment with Gingrich. It could just be the change and that will all settle as time goes on. Remember, shortly after starting Gleevec my periods were much heavier so who know. Ok, embarrassing stuff done.

The big basketball game is on and Nathan wants me to watch it with him. I don't really care who wins since the UNI Panthers didn't make it but it is time with my son.
I will keep you posted if things change. Until next appoint. So long.


(Picture of me as "Good Girl")
(Ok, Maybe not?)

Nilotinib

Nilotinib

Pronunciation: (nye-LOE-ti-nib)
Class: Protein tyrosine kinase inhibitor
Trade Names:
Tasigna

As of Monday, March 29th I started the new test drug Nilotinib. First I had the usual done of weight check, temp and blood drawn. Shortly after that I was called back to a hospital like room where several EKG's were done, and I mean several. (We had a few technical difficulties.) So what was suppose to be 3 EKG's turned out to be 5 to start out with. At least I was laying down and resting. My results looked pretty good. Little questionable on one but like Karen says, she is not a doctor and doesn't read them for a profession so she went to have Doctor Gingrich double check them. About 5 minutes later she called down to the nurse and gave the OK. That's when I took my three tablets. One 200mg and two 50mg. I was to come back two hours later which was 12:50. Now I had been fasting since about 6:30p.m. the night before. I couldn't believe how much I missed my cappuccino in the morning. I still couldn't eat till an hour after taking the pills so we walked around and checked out the gift shop then found a place to sit and we both read till it was time to head back. During this time however my husband decided to indulge himself with a nice flavorful latte. "How Rude!"

Back we went at 12:50 where I was taken back to the room again for three (actually four) more EKG's. All looked good and i was feeling good too so was free to go. That was after I signed papers for reimbursement for millage and lunch. That will be a nice part about the study. They don't cover all the millage but every bit helps.

I go back again next Monday for the same routine. If things are still looking good I wont be back again till April 26th.

Some of the things I am to do while on this Nilotinib are: fast 2 hours before taking pills and 1 hour after taking them. Water only during fasting. During study I should not consume Seville oranges or juice, grapefruit, grapefruit juices or supplements, Star fruit or juices, or Pomegranate or juices. I also need to notify Karen if I have a sudden weight gain of 5 pounds or more. I am hoping for a 5 pound weight loss would sounds good.

The reason why all the EKG's is just precautionary. As Karen says, " I know this is a lot of heart testing but we don't expect to see any problems. We just are careful when starting on the drug as there have been a few cases of heart problems with the drug in the past."

One other prayer concern we have. We have found a house we all really like and put a bid on it last Monday. However, the previous owners owe more than we are offering. That means that the bank gets involved and it is called a "short" sale. Craig talked to the Realtor again Monday and the owners where suppose to be presenting the bid to the bank yesterday. If I understand things right the bank will have to get together to decide if they will take our offer, counter it, or just forget it all together. We really like what this house has to offer and would really like to get it. So please pray that if this be God's will this will happen sooner rather then later and if not to let us know sooner then later so we can find another option. (If we can act before April 30 we can get the new home owners $8,000 tax credit)

Take time this Easter to spend it with the people around you. Isn't that what the disciples did? They were together comforting each other after what had happened days before. When the women came in proclaiming that the heavy rock had been rolled away and Jesus was no longer in the tomb there was much doubt and disbelief. It wasn't only Thomas that was disbelieving. In Matthew 24:11 it says that they did not believe the women. Even Peter had to go to the tomb to see for himself. Jesus himself even asked the disciple "why do doubts rise in your minds?" In Luke 20:29 Jesus says, "Because you have seen me you have believed; but blessed are those who have not seen and yet have believed." Go out this Easter believing and proclaiming the good news that Jesus is not dead but lives with the Father and the Holy Spirit. Death could not hold Him and because of Jesus, death cannot hold us either. Praise God!

I Had A Long Take

Do you know the song from Alvin and the Chipmunks, "Had a Bad Day?" Well, I cant say it was a bad day really or a good day but it was a LONG day. Craig and I had to be in Iowa City at 9:00 for my first set of test. First I had three EKG"s done each 5 minutes apart. That all went pretty smoothly. Got in pretty fast, she got me hooked up and ran the first of the three and then drew my several vials of blood then the other two tests. Was done there about 9:40 and my next appointment wasn't until 11:45 but thought we might as well go up there and see if we could get in sooner. The receptionist gave me a pager and we went back downstairs to get a couple lattes. As we were ordering the pager went off so back up we went. There I had the echo cardiogram done. Craig thought that was pretty cool to be able to see my heart and it pumping. To see the Left and right ventricles and atrium, the aorta, even having it colored red and blue and see the blood going in and out and really hear it. I asked about getting it on DVD and she said it was possible but then she didn't give us one. Guess I was specific enough. Thought it would be neat for not only my kids to see but the 4th and 5th graders at school are learning about the heart. Maybe if I have another one in one of my next visits I will ask again.

So not it is like 10:50 and figure my next appointment isn't until 1:00 so could catch and early lunch and not have to worry about hurrying. We went to a new place to us called the Spartin Gyro. It was really good, just a little place but you get A LOT of meat for your money. There was so much meat in our gyros that we took some of it out and we figure we have enough to make two gyros tomorrow for lunch.

Then back to the hospital early and we actually got in pretty fast too being my appointment wasn't till 1:00. We didn't see Dr Ginrich this time. Just Karen and Karen. Karen the PA came in and talked to us and asked what we used the last time I had my bone marrow done for pain. Was it just the epidural or a morphine pill? Craig thought just the epidural but I was sure I had taken a pill and after a while Craig thought I had too but granted neither of us was positive. It was all such a blur. So I was given a morphine pill and then had to wait 30 minutes. Karen came in and she proceeded to numb my hip. THAT HURT! She then went right in with what Craig calls the "ice pick." At first it didn't hurt so much. She kept saying I had a thick bone. That meant she had to "pick" a little harder. I could feel when she did aspiration which she had a hard time getting enough marrow because of my think bones but after three times she thought had enough and I had definitely had enough! I know the last time when I had the bone marrow biopsy I said I would do that over going to the dentist. Well, not so sure would be true for this time.

We had to wait for Karen to come back to talk to us so I was put in a wheelchair and wheeled out to the waiting room. I was feeling pretty woozy, like if I moved my head to fast I would get dizzy. After our chat Craig wheeled my back to the where I had my EKG at the beginning of the day for another round. By the time that was done I didn't need the wheelchair anymore and was feeling pretty good. I was wiped out and ready to go home. I thought I would sleep in the car but I just couldn't.

I should be hearing back from Karen about my test results and if everything looks good I will go back on Monday to start the drug.