Monday, May 31, 2010

Has it been a whole week since I blogged?? I had to go back and read the previous post just to figure out where I had left off... s It looks like the pill form of chemo is doing something to keep the Leukemia in check. Dr. RizzierI started the chemo pill on Monday (5/24) and at that point my white count was 16/17ish. Today, my white blood cell count was 4 so that is encouraging. I've still been going to the clinic daily for IV antibiotics and I usually end up getting an infusion of platelets as well. My body seems to be really "eating through" them.

In pain news, I was pretty much immobile by Wednesday because of my upper left leg. Michael and my mom were having a lot of trouble getting me in and out of the apartment. They did a CT Scan of my left leg Thursday Morning. They determined that a lot of pain in my left leg was caused by fluid build up in that muscle, however there wasn't necessarily a "Sac" or large area of fluid that could be removed. They aren't really concerned about this and think it will clear up on is own (let's hope so). I think the thigh problem is better but over the weekend, the problem shifted to my calves. I had been getting some red splotches on my lower legs since Wednesday. These are now nice purple and red circles and my legs, ankles, and feet are extremely swollen. This is probably "Leukemia in the skin" or some type of infection. If is is Leukemia in the skin they can radiate

Mom bought a walker on Wednesday and Roberta and David brought down a wheelchair and walker this weekend (thanks!!). I'm getting around the apartment pretty well. Other than the calf pain feel well! Kelly, Christian and Adam also made the trip - any weekend when I get to see "my boys' Is a good weekend.

Happy Tuesday.

Tuesday, May 25, 2010

Good afternoon! I apologize for being lazy in my blogging lately but I've been feeling really well since my last post and haven't had much to update on. My white count increased more quickly than they had hoped over the weekend so they started me on a pill form of chemo yesterday. I think this is the first time I've had a pill so I guess I'm just trying to get chemo in all possible forms. They say it is a very low dose and shouldn't have many side effects. I am also staying on the Hydrea to try to keep the Leukemia in check as well. We will see how this combination affects my white count/leukemia in the next couple of days. We are still having to come to clinic everyday because my body seems to be really going through platelets. I tend to need them almost everyday.

Michael made a last minute decision not to go to Utah Friday evening. He was not happy with the material he had to present so decided to hold off on it. Of course this makes his wife very happy to have him here with me but I also wish he could have gone as well.

Last night I started having some pain in my upper left leg and by this morning I could barely walk (I'm sure our neighbors got a laugh out of mom trying to get me to the car). So back on more pain medication I go. Again, clinic visits everyday do have the advantage of getting some IV pain medication to better control this. They think it is pain simply from the leukemia so I pray we can continue to keep this under control. As I have said before, I would much rather be in pain than feel "yucky" or nauseous. HOWEVER, other than this I have felt REALLY REALLY good for the last week or so.

Hope you all are well and thanks, thanks, thanks for everything!

Thursday, May 20, 2010

Hi everyone! I've had a good week so far. The doctors switched me off of IV antibiotics but I still need to go to the clinic everyday because I seem to be "eating through" platelets. I'm hoping they will give me a good dose of platelets tomorrow and let me have Saturday off. My blood pressure has also been high so they are starting me on a blood pressure medication today. I've been feeling really good this week! I've slept a lot and a lot is still a blur to me though.

Dr. Rizzieri is considering doing another round of Vidaza/Mylotarg chemo next week since my Leukemia did respond to it some. This time they would give me the Vidaza through an IV drip instead of shots since the injection sites became really sore. I've also heard from doctors/nurses and the side effects of the Mylotarg are smaller with subsequent treatments (although I really didn't have any side effects with the exception of some fever/chills). The plan is to do this all outpatient.

Michael's big Mass Spec conference starts Sunday in Salt Lake City so he will fly out Saturday and be back next Friday. Pray for safe travels for him. He loves these conferences and really takes the chance to learn what's new in the field. I admire people who find careers that they enjoy instead of just something to pay the bills and I think he is definitely on his way to that type of career. I think he will also enjoy seeing some of our friends from Purdue.

As I always, I appreciate all the prayers, cards, happy thoughts, messages, etc. from each of you!

PS - Happy Birthday to my dad!

Monday, May 17, 2010

Hello Everyone!
As you know I am finally out of the hospital. It was so nice to sleep in my own bed last night! Pretty much the last week for me has been a blur. I know I went into the hospital on Tuesday. (A lot of this may be a repeat of what my mom posted.) I was supposed to get 7 days of vidaza shots but only ended up getting 5 days because my white count went down below 1 on Wednesday. Therefore, they went ahead and gave me the mylotarg treatment on Wednesday. Sometime around this point I began having inflammation in the sac around my heart. They put me on an anti-inflammatory steroid and switched around some of my antibiotics to deal with this. They think that this has cleared up the inflammation. However, there is very slight damage to my heart that remains (caused by the Leukemia, or more likely caused by the chemo). However, Dr. Rizzieri still thinks I have a very strong heart for what I have been through. It was kind of interesting because all of the doctors and nurses wanted to come in and listen to it.

For right now, we are still coming to clinic everyday to get IV antibiotics and any blood products I may need. Today, I received a unit of platelets, two antibiotics, potassium and magnesium... so it has been a long day. Luckily, I slept through most of it. We thought my mouth sores were starting to act up over the last few days but fortunately that has not been the case! As for now, I sleep a lot, but I'm not in pain or discomfort - still a lot to be thankful for! God Bless you All, Amy

Sunday, May 16, 2010

Saturday, May 15, 2010

Still in the hospital. Dr. Chao came by this morning and told Amy things were looking good , BUT he wanted to keep her in the hospital one more day to receive the IV antibiotics and make sure temperatures don't come back. So hopefully Amy will get to go home tomorrow. Amy's blood counts are really low and with that her energy level is low too. Sleeping/resting a lot, but we do hope to get out of the room for a walk later today. One of the main things bothering her now are mouth sores, which are a side effect of the chemo, and it makes it difficult to find things easy to eat that don't make it hurt worse. Lunch was yams w/marshmallows from K&W. :) I can honestly say that Duke University Hospital is a really great hospital, but their food is not the best. We will probably start mixing Amy some protein shakes to drink if the mouth sores get any worse. So praying she gets out tomorrow and the AC keeps working in the apartment, because it is really hot/humid here. Hope everyone is having a good weekend.

Thursday, May 13, 2010

p.s. Happy 5th Anniversary to Michael & Amy 5/14 :)
Good evening,
Amy is still in the hospital. The doctors wanted to continue to give her platelets and blood as needed and to make sure she did okay with her chemo treatment of mylotarg. They gave Amy the one treatment she will have of mylotarg from 4-6 p.m. this evening and it went smoothly. All the pre-meds they gave her made her so sleepy that she slept through most of it. The pains in her back, ribs and shoulders have been much better - she has barely used the pain pump today. All the pain medication had made her drowsy and a bit "out of it"... but that is getting better as the pain meds are used less. All the medications for the inflammation around the heart are working, her heart rate which was running 130-150 is now down in the 70-90 range and she is no longer having the shortness of breath. The chemo treatments will cause Amy's counts to drop and she will have little energy and be very susceptible for infection for a few weeks, but that should improve as her counts recover.

Today has been less hectic and quieter than the past few days. Grandma Phyllis V. had driven down Monday and headed back to VA today, so we had a nice, but busy, visit with her.

We have been so blessed by the emails, cards, phone calls, etc ..... each one lifts our spirits.
Thank you, Kathy

Wednesday, May 12, 2010

Amy has had a busy 24+ hours. After being admitted to the hospital the testing began. They did the CT Scan at 1 a.m., the doctor came by the room at 3 a.m. to tell us there were no blood clots in the lungs, Amy woke up at 4 wanting a cherry Popsicle, then the nurse came in to take vitals and weight, and since we were still awake at 5:30 a.m. we decided to give Greg a call and let him know the results of the CT Scan (I don't' think he appreciated our thoughtfulness that early in the morning). Amy then slept until about 8:30 a.m. - when we had to wake up for the doctors making rounds. The day has been long and hard on Amy. She was in pain most of the day... her back, left shoulder, and both arms being the worst. They did give her a pain pump so she can get pain medication as needed. Dr, Rizzieri said there is some inflammation around Amy's heart. The cause could have been the leukemia or the chemo to fight the leukemia. They have placed her on an anti inflammatory steroid (which makes Amy very weepy) and another antibiotic to help with the inflammation. They do believe this is what is causing Amy's shortness of breath and chest pain.
Amy was feeling a bit better..then the guy came to the room to do the Echo Cardiogram. It was amazing to watch the "pictures" of Amy's heart on the screen, but it was not amazing when the technician preforming the Echo.. all of a sudden looked at us and the nurse and said, "is there a doctor on this hall?" and went out of the room and down the hall. Of course, it scared all of us. When the nurse came back we asked what was wrong, and she said nothing he just wanted permission to use some contrast to get a certain "picture" wanted... we were not amused. Then to top off the afternoon, we had a visit from the "planned one" (David) and his son (Justin). It was great to see them and had a wonderful visit. Amy was feeling pretty good until about 7:30 p.m., but then her left shoulder began throbbing bad. It took awhile to get the medication dosage that helped bring the pain down. Once the pain eased up she finally fell asleep... hoping she sleeps good until morning.

Tuesday, May 11, 2010

Good evening from Duke University Hospital's top floor...yes, Amy is back in the hospital.
At the apartment last night Amy had some shortness of breath, with pain in her ribs, chest and back. The symptoms eased up and she slept good all night. We went to clinic this morning and she again had shortness of breath with pain. We quickly found that having chest pains gets a lot of people in your room taking care of you - which overwhelmed Amy. They did an EKG, vital signs, and administered medications. Her pain starting easing up and the doctors feel it is probably a side effect of the Vidaza she is getting, but suggested it would be good to admit her to the hospital and run tests, to make sure something is not being overlooked. We are hopeful that this stay will only be a day or two. The Vidaza is given to Amy by injection (shots), 2 a day for 7 days (we are on day 5). They can give the shots in her arms or stomach. The first two days Amy had shots in both arms and her arms became very red and sore. With her arms being so sore she decided the next two days to have the shots in her stomach, now it is red and sore, but she will probably keep taking the stomach shots, so she can have better use of her arms. Amy wants to continue the Vidaza because it seems to be working on bringing her white count down. (WBC was 22 on Friday, 15 Saturday, 9 Sunday, 7 Monday and 3.7 today.)
So we are once again on 9200 , and they gave us the 'Penthouse" room.. it is larger, has a window couch instead of seat (better for me to sleep on), plus recliner - so knowing all the nurses has its perks..:)
We are so grateful for our family and friends... thank you for all your prayers and encouragement.
Love to all,

Saturday, May 8, 2010

Hi everyone! After yesterday's depressing post I wanted to post some positive results. My white count dropped from 22.5 yesterday to 15.8 today!!! So something is working to control my Leukemia. This is a big relief for me.

I went to clinic again today to get more IV antibiotics and a treatment. The chemo treatment actually consists of two shots. They can give them in my arms or stomach and so far I've had two in each arm. However, my arms are getting sore so tomorrow I will probably get them in my stomach. I was nervous at first when they told they would be shots because the only shots I could remember having were tetanus and neupogen which both hurt. I hardly felt these little shots, the site just get sore later.

I'm still having some back pain which is controlled very well in clinic through IV Dilaudid however my oral medication doesn't cut it quite as well. They are working on adjusting my pain medications so hopefully that will get better

Thank you to all of you who continue to pray for comfort and the for the effectiveness of these treatments, much love to you all!

Friday, May 7, 2010

So I haven't updated in while because things have been changing kind of rapidly and not so much for the good. WARNING: This post was hard to type and may be hard to read. First, let me say that we have run out of "curing" type options. The treatments I am receiving now are simply to try to control my Leukemia as much as possible and give me more time while also weighing quality of life vs. quantity of life. Michael and I have truly found peace with this and are actually handling it very well. We've kind of been eased into this. We knew it was a big possibility when my Leukemia came back in November and especially when the chemotherapy I received in December did not work.

We found out that I am not eligible for the clinical trial that is starting in May so that was our first change in plans. I started taking Hydrea on Tuesday but unfortunately my white count still took a fairly big jump. We were hoping that the Hydrea would at least work for a couple of weeks but it doesn't look like it is controlling my leukemia well enough. So, we go to the next plan. Today I am starting a round of mild chemotherapy (Mylotarg and Vidaza). They really think I will not have many side effects from this and will tolerate it well. These drugs will be given to me outpatient but this means I have to come to clinic everyday. In addition to this chemo they are tripling my dose of Hydrea hoping that it will at least help a little.

I also had a low grade fever last night and this morning so they put me on IV antibiotics. One positive thing is that I don't have to deal with the side effects of oral antibiotics. This seems so little but let's focus on the positive! Again, another positive is that this is outpatient treatment so I get to sleep in my own bed! My back has also been hurting which they say is probably an effect of the high white count so I really appreciate pain medications right now!

Hope all of this makes sense, it's a lot to take in. In spite of the fact that my Leukemia is being stubborn and hard to control, I actually feel good which I am so thankful for.

Hope the weekend treats you well, and Happy Mother's Day to all the moms out there,

Sunday, May 2, 2010

Hi everyone!

It's been so touching to hear all the stories about the prayer time for me. I still feel so blessed to have you all supporting me. I only wish I could see you all more often.

I decided not to take my last treatment of STA-9090 on Friday. The side effects have been building up and I wanted a break from it. The doctors were fine with this as well. As of now I'm going to stay on a Tuesday/Friday schedule for clinic visits. They have not put me on Hydrea yet, they are going to continue to watch my counts and when they get too high or start to rise more rapidly that's when we will start Hydrea. The drug only works temporarily so they want to wait as long as possible before using it. This will bridge the gap until the next clinical trial starts. We do not know when it will start just that the drug company is hoping to start it this month.

I've been very tired lately and sleeping a lot. I hope to travel to VA next weekend for Mother's Day so pray that I have enough strength and energy to do so.

Much love and thanks, Amy