Wednesday, March 31, 2010

Hi Everyone! We're still enjoying Spring and feeling good here in Carolina. The antibiotics can make me feel yucky and a little nauseous but I think I'm getting that under control by taking an Ativan 20-30 minutes before I take the antibiotic. Other than having low energy and a few stomach aches all is good. Another piece of good news is that they did get FDA approval for giving me treatment twice a week. A research oversight group at Duke still has to give approval but if the FDA approved it there's no reason to think they will not approve it. So twice a week treatments will start next week. I will have a Bone Marrow Biopsy Tuesday before the treatment. My usual PA who has done my last 8 or 9 BMBs will be out of town so I'm a little nervous about it this time but they will give me lots of good drugs to relax me beforehand. The drugs they have today amaze me, I don't know how people had surgery or other small procedures without sedation or conscious sedation drugs in the past. Yea for Anesthesiologists! (Although the drugs I will get aren't strong enough to require one.)

Also in good news, Michael and Matthew are leaving for Indiana tomorrow to go to the final four! When we lived in Indiana we figured we would enter the lottery for tickets (there is a 10% chance you actually get them) since it would only be an hour away. Well we got tickets! So they will be viewing the final four on the big screens while sitting in the nose bleed section of Lucas Oil Stadium watching the little ants bounce around a barely visible ball. They're still excited though! Wish them safe travels. I will be perfectly content watching it from my comfy chair.

Thanks for reading my ramblings! :)

Saturday, March 27, 2010

It's been a semi-good week. Like I said Tuesday I got to go off of my IV antibiotics but that meant I had to go on oral antibiotics. (They keep me on antibiotic, antiviral, and antifungal medications constantly.) The first oral antibiotic we tried really upset my stomach so Wednesday and Thursday were kind of "yucky". They changed the antibiotic on Friday and so far it is better. I'm still very tired. My arm pain caused me to be more immobile than normal and I need to start walking again and build myself up. However, I really don't have many complaints right now. I feel good for the most part and the blast count in my blood is still slowly decreasing. I will have another bone marrow biopsy before starting two treatments a week. The PAs laugh and say I'm going for a record number of BMBs. They're really not that bad you just have to relax. (Hopefully none of you will ever have to have one though.)

Hope you all are enjoying this beautiful weekend,

Tuesday, March 23, 2010

Things are still going well here in Durham. Monday was my last day of IV antibiotics so I no longer have the blue IV bag to carry around and I no longer have to go to clinic everyday. I did go to clinic today to get my 11th dose of STA-9090. My white count made a jump today which scares me but supposedly the percentages of blasts in my blood are staying the same so they are not worried. I have two days OFF!!! Friday will be my next clinic visit. It will be very enjoyable to sleep in since we've been going to clinic for about a month without any days off.

Hope this update finds you all well,

Sunday, March 21, 2010

Hi everyone! I'm still feeling great and I feel completely blessed this morning. The bowling tournament held for me yesterday was a huge success. I think everyone had a wonderful time and the fact that so many people gathered to support me is so uplifting. Thanks to Mike and Betty Layton, Lisa Maynard, Tina Payne, Gene Peters, area businesses, and many more. I am so greatful to all of you. Also Thanks to everyone who made baked goods and of course everyone who bowled. The only thing that disappoints me is that I could not be there.

Again many, many thanks!

Friday, March 19, 2010

It's been a good couple of days. No more problems on the "chain of problems" and I'm hoping to keep it that way. My white count jumped a little at the beginning of the week which is always a worry with Leukemia but it's going back down. It was probably just a result of the infections. However, the blast count in my blood smears is staying the same.

Enjoy the weekend!

Wednesday, March 17, 2010

I must be Irish!!! I woke up this morning with no pain (I didn't take any pain medicine in the middle of the night either). The central line site is barely red at all. I can't believe how something can change so much in 48 hours and I am so glad that this line will work for me for a while (knock on wood). I'm still having to go to the clinic everyday to get antibiotics but those should finish up sometime soon.

I'm loving this weather, hope you all have a lucky day,

Monday, March 15, 2010

Hi everyone! It has been a pretty good week. I've had lots of pain with the central line but the pain medication is helping a lot. This is my third central line and each one has been very painful for the first few weeks. Yesterday the site started getting red and today it was much worse and swollen. They think I have some cellulitis around it and switched my antibiotics around a bit. I get one antibiotic daily at the clinic and the other is given through a portable pump. It's really neat! It's this blue bag (the nurses call it a fanny pack) that I have to carry around with me and it gives me an hour dose of the antibiotic three times a day. I'm glad they have come up with stuff like this so you don't have to go in the hospital to get IV medication. Hopefully these new antibiotics will take care of this infection so they can save this central line. I'm starting to run out of options as far as vein access. I think my veins are protesting to being poked and prodded so much.

I get a treatment tomorrow and hopefully once this infection clears up we will get some days off from the clinic and get back to just having treatments. Have a good week, Amy

PS to David Richardson - We have to clear something up here... in this household we are Boston fans, so George Steinbrenner will have to find someone else!

Wednesday, March 10, 2010

An un-eventful day! YEAH! We had a "normal" day today - a clinic visit to get my IV antibiotics and that's it. My arm is still very swollen. My right arm is about 7 cm larger in circumference than my left arm. However, the pain is drastically better. Dr. Rizzieri came to see us in the clinic today and the drug company (Synta Pharmaceuticals) has decided they want to give me almost the same dose (just a little bit lower) twice a week. The drug is called STA-9090. They have just finished a round of doing this on solid tumors and I will be the very first on this protocol for a liquid tumor. The FDA actually has to approve it for me first. So the plan is to have one more cycle (3 more treatments) of once per week then we will go to twice a week as long as we get FDA approval which should not be a problem.

Other exciting news - Joleen (Michael's aunt) got a letter today that she may be a possible bone marrow match for someone. They told her that she is one of "less than a handful" of possible matches and it is someone that is outside of the US. So I'm ecstatic that she may be a donor. The chances of her actually being a match are still low but it's still exciting. She registered for Be The Match at a bone marrow drive several years ago. One of the doctors (not a transplant doctor just an oncologist) told me that having a bone marrow drive was basically pointless because the chances of adding a new HLA type are so slim. (I couldn't believe he said this!) SO this shows that you never know when you will possibly add someone that would be a match. If everyone had his attitude there wouldn't be a bone marrow registry.

Pray for more days like today! (Not to mention the weather!)

Tuesday, March 9, 2010

I can't believe how busy the last week or so has been. It has seemed like problem A goes away right as problem B pops up. However, God will never give us more than we can handle so maybe this is why I've had this little string of problems/pain and I am thankful I didn't have to deal with all the problems at one time. I finally feel like I am on the road to no pain. My mouth sores are better and my toe is better. My arm is still painful but I think it is getting there. They decided today not to put in a Hickman line but a "Hohn" line instead (It is smaller than a Hickman line and goes in near my collar bone and directly into a vein). The Hohn line is much less invasive to place and remove. Hickman lines "wind around" more inside the veins. I am extremely happy they did this as I think it will be much less painful. All went well with the placement this morning. I will get my 9th treatment today at the hospital and then we will be headed home. I was nervous about controlling the pain at home (especially if they had put in a Hickman) but I feel very comfortable now. I think we will get back to some kind of "normal" in a few days. We are continuing on with the same dose that I was on before since my Leukemia seems to be responding to it. Also the drug company has to finish up with some more patients on this dose before raising it. So it may change in a few weeks.

Thanks for all of the prayers over the last week, it was a tough one and you all helped me get through it, Amy

Monday, March 8, 2010

Just a quick bit of good news - we got the results of the bone marrow biopsy and the Leukemia cells have dropped to 30%-40% of my bone marrow. This is down from an estimated 50%-60% last time! So not so good news this morning but this has more than made up for it. I will get another treatment tomorrow but I'm not sure if they are going to change the dose or anything.
We found out this morning that I DO have a blood clot in my arm so my PICC line had to be pulled. They think the clot will just resolve itself and there is only about a 1% chance that a clot in the arm would move anywhere to cause damage. For now they have put a regular IV in my other arm and I will have another Hickman placed in my chest whenever they can work me in. I've had two Hickman lines so far and both have been somewhat painful for the first week or so. I need lots of prayers that this one will go more smoothly.

The pain in my arm is still pretty bad and it is extremely swollen. Dr. Chao said it looks like I have just been lifting weights with one arm. I will probably stay in the hospital for at least another night to control the pain. A lot of things are up in the air right now because we don't know when they can place a new Hickman and also we do not have results from last weeks bone marrow biopsy. Those results should come sometime today and hopefully they will decide what the next "cycle" of my treatment will be. I hope they can still get it started tomorrow but we will see.

Much thanks for all of you who keep up with this blog - I appreciate all of you who have followed me for over a year.


Sunday, March 7, 2010

2 updates in one day! I guess I just feel like writing today. I am settled in the hospital, they are giving me pain medication through my IV every 3 hours, and I have some of my favorite nurses. So things have really improved throughout the day. Just wanted to end the day on a positive note, Amy
Well, it's been a long week! As I said last time I had a new PICC line put in Thursday and the nurse had a lot of trouble getting it in. (A PICC is basically a tube IV that is placed in my upper arm). My arm has been sore, swollen, and bruised ever since. This morning I woke up and could not move my arm because of the pain. We came straight into the clinic and finally got some IV pain medication that eased the pain. The pain is probably just a result from the trouble they had putting in the PICC but the doctor is scared that I may have developed a blood clot or infection of some kind. SO, I get to pay a visit to my second home. They are putting me in the hospital overnight for observation. They will do an ultrasound on my arm sometime this evening (hopefully) to look for blood clots. However, if they do find a blood clot they are not really sure what to do because my platelet count is so low which is quite worrisome to me. In addition they do not want to pull the new PICC line because there is nowhere else to put one. If they do end up pulling it, I will get another Hickman placed in my chest. It may sound strange but I am glad they are putting me in the hospital so I can have access to IV pain medication. I was really worried about what to do when I got home and it started hurting again since the oral medication wasn't cutting it.

So enough complaining! My mouth sores are getting better and overall I had a good weekend. Roberta and David came down Friday to see us and Genie and Carol came down yesterday so we had good visits with family.

Hope you all have a good week! Amy

PS - I miss curling.

Thursday, March 4, 2010

Today has been a LONG day. We went to the clinic to get my IV antibiotic. After looking at my PICC line today they decided it needed to be pulled. They also put me on an additional IV antibiotic. So after receiving both antibiotics we headed over to the hospital and had a new PICC line put in and and the old one pulled out. The nurse had a hard time getting the new one in and actually had to try 4 different veins before it finally worked. Since I have switched from oral antibiotics to IV antibiotics I will have to go to the clinic each day for a while. The upside is I do not have to take Cipro anymore which makes me feel "yucky". They also upped by pain medication for my mouth sores. I am concerned about my mouth sores because it hurts most on the left side and it isn't quite like the mouth sores I had before. I'm scared it has something to do with a tooth or something. Let's hope not.

As always, thanks, thanks, thanks!!!

Tuesday, March 2, 2010

Hello everyone! A lot has been going on in the last few days. Friday, I started getting a few mouth sores and by Saturday morning they were in full force. My cheeks are now swollen and it is pretty hard to talk or eat. The doctors upped my Valtrex (antiviral med). They also took cultures to see exactly what is going on in there and how to properly treat it. They said it actually looked more like a fungal infection. These sores aren't near as bad as the sores I had after the transplant and I am also able to control most of the pain with medication. It is a little frustrating to find things to eat though. Right now my diet consists of mashed potatoes, sweet potatoes, gravy on bread, and ice cream.

Second Issue: My toe. I have another infection in the skin around the toenail. Last night by whole left big toe was basically all red, but thankfully it looked better this morning. They put me on an additional antibiotic to deal with this.

Third Issue: my PICC line entrance site is not looking good so they put me on IV anti-something today in hopes of taking care of that. I told mom I felt like I was falling apart with all of these little issues happening all at once. This also means I will probably be going to clinic more often to get the IV drug. I also have to come in tomorrow for a bone marrow biopsy. I'm hoping for good results but very nervous and uneasy about it at the same time.

The Good News: I got treatment #8 today and other than the nuisances I have already complained about, I'm actually feeling really good.

It's been exactly one year since my first appointment at Duke. I've learned a lot this year. I've gained much respect for those who work in the healthcare field, especially nurses. The nurses at Duke have been absolutely amazing. They let me know about what to expect during each step of the process and they also advocated for me when they thought I was in pain or needed some other type of medication. They are sort of the "front line" against the disease. I've also learned what a huge support system I have and how much my friends and family care about me. It is a shame that it takes something like cancer to make me realize this completely but now that I have it is amazing. I could ramble on for pages about the things I've learned but I will save that for another time.

Love and Thanks to All, Amy