Saturday, October 30, 2010

I guess I feel the need to write one last entry into Amy's blog.

Amy passed away Oct. 26, 2010 .
Her obituary can be seen at

Amy's service was touching and beautiful.
The day was a gorgeous autumn day.
The time with family and friends is something we will always remember.

Thank you to everyone who has followed her blog and supported us thoughout this journey.

Monday, October 25, 2010

This weekend went by quickly. Saturday Amy was still having pain in her left sinus area, so we contacted the nurse and she came over and upped the dosage the pain pump delivers. This seems to have worked and Amy is not having near as much pain as she was. The only problem with upping pain medicine is it makes Amy sleepier, but we will take her sleeping more over her having pain. We watched some football Saturday, and Greg and Amy played trivia games on sporcle Saturday night ( they do pretty good together - Amy gets the newer answers and Greg can answer most of the "oldies").

We have been amazed at the love and support shown to Amy. I hate to leave anyone out and in time I hope to thank everyone, but for now I do want to say a few Thank Yous :
Thank you Blair and Carol for the "happy " Bob Ross Paint Kit you sent, Amy was surprised and enjoyed receiving that -we hope to use it this week.
Thank you to our "only planned cousin in South Carolina" for the many wonderful care packages... nothing goes to waste in them :)
Thank you to Joleen, John, Teagan, Phyllis, Bucky, Wanda, Janice, Bonnie, James, Roberta, David, Gale, Jared, Webbs and Feazells.... everyone ...who worked, helped, ate, stopped by the Bean Supper held for Amy. Roberta has some pictures on her facebook page and it looks like everyone had plenty of good food and company. Wish we could have been there.
Thank you to everyone who's praying for Amy. We do feel strengthened by your love and encouraging words/thoughts sent our way.

love to all

Friday, October 22, 2010

Good Morning,

Amy has had a fairly good week. The main problem she is having now is pain/pressure in her left sinus and ear. The nurse is going to come by today to check on it and see what can be done to alleviate it. She is taking augmentin for any infection, but they may need to up her pain medication dosage to help with the pain she is experiencing.

Amy is very thankful for all the comments here and on her facebook page. The support, encouragement and love shown is amazing and helps boost spirits and comfort her. We feel so blessed to have such wonderful family and friends.

This week we have watched old movies, played games and Christmas shopped online.
Amy was able to get most of her Christmas shopping done. The FedEx, UPS and USPS guys will not like us very much over the next week with all the packages that will be coming. Amy's bed downstairs is right in front of the sliding glass doors and yesterday was so beautiful we opened the doors and let the autumn breeze come in . We also have pumpkins on the back deck, and I hope to get out this weekend and get some mums to add to the colors of the leaves changing. Isn't autumn a beautiful season!

We still might try our hand at painting next week. I will not paint a clown.. I cannot be the only one who finds clowns ( and the Burger King guy) really spooky :). Not sure what we will paint.. any suggestions?? (hey Blair, we may have to find some old footage of Bob Ross to inspire us :) )

Love and hugs to everyone,

Tuesday, October 19, 2010

Good morning,

Sunday was a long day. Sitting at the hospital waiting to get released seemed to take forever. So when we finally got out of the hospital around 2:30 it was so nice to get back home.

Amy loves having a bed downstairs so she does not "have" to go up the steps if she does not want to. The nurses, supervisors and even the delivery guys from Duke Hospice have all been extremely nice and caring. Amy is now hooked to a small pump (it is in a "fanny pack ") that delivers a constant dose of pain medication to her every hour, plus she can push a button and it delivers a "extra" dose if needed. This is really helping and she can give herself more if she is getting ready to eat, which helps with the mouth/throat pain.

Yesterday we were lazy. We watched TV and played games on the computer. We have become hooked on a website called Sporcle - it has hundreds of trivia quizzes in categories from literature, TV, movies, sports, etc... be warned if you try it, it can be addicting :) We had a good day and Amy is feeling pretty good. We have been going back and watching some of Amy's favorite movies as a child... "Return to Oz" (with a talking chicken, flying moose couch, some guy with a pumpkin head..I find rather disturbing :), Babes in Toyland, Seven Brides for Seven Brothers, ... and Christmas movies are on the agenda. I told Amy I might go buy canvases and we might even try our hand at painting (Michael is opting out of this one ).

We cannot say it enough..thank you. We are still amazed at the care, love and support being shown to Amy. It means more than we can express in words.
love to all

Sunday, October 17, 2010

Good morning.

Thank you, to everyone, for your prayers, love and support when it was needed so much.

Amy will be getting out of the hospital today (Sunday). After many prayers and much thought, Amy will be moving on to hospice care. Amy biggest complaint right now is her terrible "stuffy" nose.

Even with all that has been going on the last few days, it has been a good weekend.
Our visit with Mary Beth and Genie has been very nice. The four of us sat in the hospital room yesterday and talked , laughed and drove Amy a bit crazy with the three of us" hoovering" over her, but it was very special and Amy put up with us well.

Hope everyone is able to get out and enjoy the wonderful autumn weather. We love the cooler temperature.

love to all

Friday, October 15, 2010

Today started off bad.

As I was driving Amy to clinic this morning, she was telling me she did not feel right. Just as she was saying the words she began to have a seizure. Thankfully I was able to get off the main road on to a side road , stop the car and get around to her fairly quickly. The seizure probably did not last that long, but seemed like an eternity. After it was over, she was confused and looked up at me and ask what in the world I was doing? The last thing she remembered was me driving then all of a sudden I'm standing beside her on the passenger's side of the car. I am so thankful she does not remember any of it. We proceeded to the clinic, and I called them to report what had happened and as I pulled in front of the clinic several nurses and a doctor were there to help me. The staff at the ABMT Clinic is amazing and I have grown to love and respect them all. The staff checked Amy over and decided to admit her to the hospital. Amy has not had any more seizure activity and has rested well and feels okay. Its nice that they are giving her IV medications which keeps her pain under control. Michael brought her some of her favorite banana popsicles to the hospital, we watched a few Law and Order reruns and had a great visit with my sister Mary Beth (my other sister Genie comes tomorrow :). Thankfully the day ended better than it began.
*We would like to ask for prayers - there are some very tough decisions to be made.
Like Amy has said, we cannot thank you enough for all the thoughts, prayers, emails, cards, letters, phone calls, visits, support, ... over the 19 months.
Thank you,

Wednesday, October 13, 2010

Warning: not a good update

Apologies, apologies for not updating sooner. It's been a hard week and a half with good days and bad days. My mouth sores were seeming to get better last week then Friday they started getting worse. Another sore popped up in my throat yesterday but it has felt better today. They switched my antibiotics around , so that may have been the reason for the sores to get worse, so we've switched medications back and again upped my pain medications so hopefully it will get taken care of.

As I said last time the Revlimid didn't have an effect on my leukemia. However, going back on the Hydrea has brought my white count down again into the single digits. This is good but we do not know how long the Hydrea will continue to work.

We had a talk with Therese and Dr. Rizzieri and they really feel any more treatments would cause more harm than good to my quality of life. So we're focusing on keeping my energy level up with red blood cell transfusions, controlling pain, and praying that the Hydrea works for a good amount of time.

Right now mom and I are having fun watching movies and Law and Order reruns. My aunts (Mary Beth and Genie) are coming this weekend so that will be nice.

Today has been a good day and I'm sure tomorrow will be too! Thank you all for your support through the last year and half - I cannot express that enough.


Monday, October 4, 2010

Hi everyone! I'm happy to report that things are getting a lot better as far as my mouth sores/throat. I'm able to eat a lot more food but things still don't taste like they should (but as long as I can eat different things I'm not going to complain).

On the other hand the Revlimid did not work in lowering my white count. In fact, it shot up to 30! (normal is 3.2 - 9.8). So this must not be the drug for me. Dr. Rizzieri put me back on Hydrea hoping to get this count down again. Like I said in my last post there is a drug he wants to put me on which is similar to the STA-9090 (a protein inhibitor) that I was on at the beginning of this year. However, it will require a weeks stay in the hospital. This doesn't totally depress me because I know all the nurses and like the 9200 unit but a week away from my bed is not appealing. It also makes it harder on Michael and Mom when I'm in the hospital. (I'm a very spoiled in that I do not like hospital food and so mom or Michael bring me my meals plus I still don't like staying there by myself at night.)

My only other problem right now is just being incredibly weak. My legs have very little strength and I am having trouble with balance when I walk. Mom and Michael make me hold on to them whenever we walk anywhere.

Hope you all have a wonderful week,

Wednesday, September 29, 2010

Hello Everyone! So I'm not really sure where I left off in updating you all so I will just start with this weekend. Saturday I woke up with chills/cold sweats/hot flashes and it was just a pretty awful day. I never had a fever but slept most of the day. The days since then have been much better. I'm still feeling extremely weak, especially in my legs. Going up the stairs is a challenge.

My white count has also started to climb this week so we are doubling the Revlimid and hoping it will do a better job, if not, Dr. Rizzieri has yet another drug in mind to start sometime in the next few weeks. After the mouth sore/mucousitis situation I'm going to really have to weigh the possible side effects vs. possible outcomes of these drugs. This new drug would also require about a weeks stay in the hospital. These are tough decisions that I need all of you to pray about. I trust God will lead me in the right direction.

Hope you all are having a good week,

Sunday, September 19, 2010

Wow - I did not realize it had been so long since I posted a message. Sunday through Wednesday were good days; I felt like I was improving everyday. Thursday and Friday weren't so great. The coughing just pretty much took up my day which makes me achy and just feel yucky. I feel like I have three problems: mouth sores, throat irritation, and coughing/mucous. They tend to rotate as to which is worse at the moment. Right now the mouth sores are the worst, I've even felt a couple new ones pop up over the last couple of days. My appetite is dwindling so we're also having to watch my weight to make sure I don't lose too much weight.

They took me off of the Hydrea. The way I understand it is that the Hydrea works to cut down the number of white cells in the blood. Revlimid, on the other hand, tries to get the bone marrow to make good cells. So hopefully once the Revlimid gets in my system, it will help create some good white cells and clear up my mouth/throat. I had low grade fevers the first few days I was on Revlimid but those have gone away and they say this is not uncommon.

Hope you all have a good week,

Saturday, September 11, 2010

Hi Everyone! It has not been the best week here in Durham. They say "two steps forward and one step back" and this week I've definitely taken a step back. I really cannot tell if my mouth is improving or not but the main nuisance has been the cough and mucous it brings up with it. My throat is just raw from this. They say my lungs sound clear and it's all in my lower throat, which is good. However, I have been running a low grade fever off and on. Hopefully this congestion stuff is nothing more than mucositis, if not they will have to put me on stronger antibiotics.

Now for the answer to the million dollar questions "are they here yet?" YES
The Revlimid came Thursday so I've had 3 doses of it so far and haven't noticed any side effects yet.

Thanks for all of prayers and support, Amy

One final note:
JMU 21 Virginia Tech 16 - I have never been more proud to be a JMU Duke!

Saturday, September 4, 2010

It's been a good week here since I last updated. Things are improving just very, very slowly. My mouth sores/throat are improving. I even ate a grilled cheese yesterday! My biggest problem in the last few days is just all the fluids. I've had some sinus headaches (I assume that's what they are) because of this. We still have not received the Revlimid but we're told it should come in the mail sometime soon.

My next topic: David Richardson. He is my very entertaining cousin (2nd or 3rd or both, I don't know - the origins are West Virginia). I thought you all would enjoy this picture of him in Alaska:

So if you thought he was crazy before, you will really think he's crazy now. I have spoken to witnesses that this is not photoshopped, it's the real deal. (Sorry David - hope you don't mind my posting this pic)

Hope you all have a good labor day weekend,

Monday, August 30, 2010

Hello Everyone! I'm still on the IV antibiotic that I carry around and have only forgotten that I'm attached to it a few times. This means I have to go to clinic everyday for them to give me a new bag and reset the pump which doesn't take long. However, Tuesday I had a nosebleed and had to stay for platelets as well. They do blood work on Monday's, Wednesday's and Friday's so I almost always have to stick around for platelets and sometimes red blood cells.

As far as the mouth sores my mouth feels much better, but my tongue and throat are still causing problems. I still cannot talk and eating/drinking is pretty difficult but we're being creative and making it work. Banana popsicles are my life saver! I mentioned before that the mucositis also makes you produce lots of thick mucous and fluids in your throat/sinuses/chest so I'm still dealing with the cough and all the fluids I cough up (okay, I'm getting too gross I will not go into any more details). With my white count being so low they say this is just going to take a long time to heal. Like I said we're making it work with eating but I still have to worry about my weight dropping and have to try to get in as many calories as I can (never thought I would have to do that).

After all this complaining, I still think I feel good. I feel like going out and doing things. We went to the grocery store Monday and the mall Tuesday and those were the highlights of my day! Not being able to talk makes that complicated but I carry around my notepad to talk to mom and Michael. In addition, my legs are still very weak. Going up the stairs is a challenge, but I'm working on it. So overall, I think things are improving, just slowly.

As far as the new drug (Revlimid) we have a few more paperwork things to do and then they will mail it directly to me. So we're hoping to get it sometime next week. Since my white count is staying down they're not really worried about the delay in getting the drug.

Hope you all are having a good week,

Wednesday, August 25, 2010

Good news! I did get approval for the Revlimid from the drug company and insurance. It is a pill that will be shipped to me and we will hopefully get it sometime the beginning of next week (although it takes mail a long time to get here).

They also put me on IV antibiotics today to try to clear up my mouth/throat sores. I really haven't seen any improvement since my last post. I'm glad to be more proactive in trying to clear these things up. I have a little "take home" pump again that gives me the antibiotic 4 times a day through my central line. I just need to remember that I am attached to the pump! I've already forgotten once after only having it for about 3 hours.

Thanks for all of your prayers, cards, well wishes,...

Monday, August 23, 2010

So I still don't have much to update you on. My mouth sores are getting better but my throat and cough are about the same. My menu now pretty much consists of: fruity pebbles, chicken noodle soup, flan, egg custard pie, and of course banana popsicles. So hopefully my throat will clear up soon! Not that I'm complaining about any of these foods but some variety would be nice.

We had a clinic visit today and we will hopefully know something about the Revlimid on Wednesday. My white count is still staying around 1 with just the Hydrea. So again things are status quo.

Other than my mouth and cough I feel really good. The downside to feeling good is that I have no excuse not to walk on the treadmill. I am still very weak - it is hard to go up stairs. My legs just don't work very well and I need to work on that. (I can hear Katie Brown and all other Physical Therapy people giving me a lecture right now.)

Hope you all have a good week and ENJOY going back to school!

Thursday, August 19, 2010

Hello! I'm glad to report that each day since Saturday has shown improvement. My mouth sores are at a point that they are manageable with Lidocaine but my throat is still very sore. In addition to mouth sores, mucositis caused by chemo greatly increases fluids in the throat. So a cough also comes along with it which irritates my throat. However, I feel like I finally see a light at the end of the tunnel as far as my mouth. Wow - I didn't know I could write that much about my mouth.

Medically, my white count is still holding around 1.0 with just the Hydrea which is good. I'm still not sure when we will start the new drug called Revlimid. From my understanding this is not a chemo drug and does not have the side effect of mouth sores!!! So I'm looking forward to it.

Hope your week is going well and everyone is having fun getting ready to go back to school :),

Saturday, August 14, 2010

Hi everyone. So there isn't much to update you on. Things have pretty much stayed status quo over the last few days. Unfortunately they haven't been the best days. My mouth sores continue to worsen. Eating and talking are very hard so I am back to my dry erase board of last summer. I probably will not take anymore cytarabine treatments and just wait on the other drug. Hopefully, I've reached the height of my sores and they will start to heal.

Much thanks for your prayers,

Wednesday, August 11, 2010

So as you may have noticed I have really enjoyed blogging lately. I've even started thinking of myself as a "blogger" and not just an "updater". Maybe a book is next (that may happen when pigs fly). Actually after 18 months of constant medical care I probably could write a book.

So for the "updater" part of this post - I had to skip my dose of chemo today because my mouth sores were so bad. I will probably have to skip Friday's as well. However, my white count was down to 0.7 and hopefully the Hydrea will keep it down and until my mouth sores clear up some and I can get on the "other drug". This is the drug we had to apply for and it does not have the side effect of mouth sores. I call it the "other drug" because I don't remember its name and don't understand completely what applying for it means but I have been told we will be approved. I've gained enough trust in Dr. Rizzieri and Therese that I trust them to put me on the appropriate drugs.

For the "blogger" part of the post I thought I would write about a weird side effect of the oral chemo pill I took a while back (Etoposide). It actually darkens your skin tone which gave me a tan. So I have enjoyed a nice unearned tan so far this summer. However it is now pealing like a sunburn and I am turning back into my very white self. This may remind you of the late great Michael Jackson. It is interesting to me that chemo is not just about nausea, vomiting, and losing your hair like they show in movies or on TV. I'm sure many of you who have had the misfortune of having cancer can identify with this. I do look at the positives of chemo as well - I have wigs that look better than my real hair, I've lost weight, and I have a nice tan.

As always, thanks for following me, praying for me, and everything you do,

Monday, August 9, 2010

I got so much feedback from my last post (mainly through emails to my dad and comments from people) that maybe I SHOULD write more often. I just thought they were boring ramblings to keep some people up to date on my health. So anyway, I thought about writing about other things besides my health. I wrote one time about the movie Julie and Julia and how she blogged about cooking through Julia Child's cookbook. I'm working my way through a Sudoku book - so I definitely don't think that would be interesting to blog about. (It's called "Naked Sudoku" and is written by one of my former professors, Dr. Laura Taalman from JMU - the "naked" part is because the puzzle is blank to start and only has clues like less than, greater than, this colored set adds up to this number, etc. - you can buy it on Amazon -here - okay I'm done being a math nerd).

However, the main purpose is updating on my health, so here it goes. I'm recovering well from my fall. It took a toll on my left knee as it was hard to bend for a few days. My face still looks wonderful as well! My mouth sores are becoming the bigger problem. They are getting worse to the point that I may need to skip a dose of chemo this week to try to slow them down. Eating is kind of like taking medicine at this point I just try to get down as much as I can and be as nutritious as possible. If you know me, this is very stressful because I love food and wish it could be something to be enjoyed and not just a necessity. In addition talking is a little hard as well. My white count was 1.1 yesterday and I received both my chemo and platelets at the clinic, so this seems to be going on track.

Since I said I would write about other things I guess I should do that. (Men may skip this paragraph.) I love my wigs! I went a year or so without really wearing them but actually going to a store and buying ones that "fit" me has changed that. I have two that I wear regularly, one is short and straight and the other is long, a little wavy, and has bangs (which I have never had). It is a little bit of a change for me. After my face clears up some I'll have to give in and post pictures of me in them (that will make my grandmother happy).

Hope you are all having a good week and as always thanks for everything you do!


PS - I hope you are all enjoying some cupcakes this month, they sound absolutely delicious and I wish I could try each of them! (BIG Thanks to Sheila and Celia)

Wednesday, August 4, 2010

So, this post could either be titled: "Amy's terrific tumble" or "Amy's stay on the prison ward of the Trauma Unit"

Let me explain, my legs have been very weak lately because that's where I've lost the most weight through this ordeal. (I love my new weight but trust me this is not the weight loss plan that you want to try out.) In addition we have an uneven sidewalk leading into our apartment. Well, I tripped, fell, and hit my jaw on the first step leading into our apartment. I am fine today I just look like I was in a really good fight. I have a bruise on my jaw - looks like I took a good left hook from someone boxing. Other than scraped up knees and elbows I'm fine though - it could have been a lot worse.

So that's the story of the fall.

Part 2: We called the bone marrow floor (the clinic had closed by this point) and they wanted me to come to the ER because I was bleeding in my mouth (with low platelets any bleeding is a concern) and they wanted a CT scan of my head since I hit it (the CT scan was fine). Well, patients that have immune system problems and shouldn't be sitting in the waiting room with all the sick people are put into the trauma unit when they are not busy by the ER. While I was there every patient who came in was accompanied by a cop and was obviously drunk. It became quite funny - one guy was describing the fight he was in to the nurse (of course he was winning). They also got a call that a stabbing victim was coming in and they were prepping for him but the police called back and said the victim had ran and to call them if he came to the hospital. Quite comical - it provided good entertainment for us while we were waiting.

I'm at the clinic now to get the full round of platelets, red blood cells, and chemo. My cough is gone and that has made me feel much, much better. Also, my white count today was 1.6 so we are still dropping! I have lots to be thankful for today that I didn't break anything. I get many cards that mention "God holding you in the palm of his hand" and this must be true.

As always thanks for keeping up with me and for everything you do,

Tuesday, August 3, 2010

Hi everyone. It has been a good week for me. Most days I have felt good and gotten out to clinic or someplace else. Mouth sores are still a problem - they do not seem to be getting any better so eating is hard and taking pills is especially hard. My cough/congestion seem to be going away though!!! They were scared that the congestion was caused by Leukemia in my lungs, but if it's clearing up that must not be the case.

I've had two doses of cytarabine with no side effects so far and my white count was 2.8 yesterday. To explain a little (I am a teacher at heart - feel free to skip the rest of this paragraph) This is lower than a normal white count should be but for someone with Leukemia it's good, because a high percentage of these white cells are cancer cells. Cancer (in any form) is fast growing immature cells and in Leukemia's case one has fast growing immature cells in the bone marrow that produce BAD white cells (called blast) that don't work to fight infection. So the fact that my white count is low shows the bone marrow is not producing those cells that fast. However, the bone marrow is not producing good cells either. (blah, blah, blah...)

So we'll continue with the Monday/Wednesday/Friday schedule at the clinic where I get my chemo and most likely a bag of platelets. We're also going to add some other drug at some point - we're waiting on my new insurance card to apply because on top of all of this I had to change my insurance to North Carolina's "High Risk Pool". I tell you this because I can't tell you how helpful my mom has been at dealing with this and the other insurance company... She's handled it all. Anyway I can't thank her enough!!! And on top of that she takes care of me while Michael goes to school.

Hope you all are well and enjoying your summer - pray my mouth sores go away!
Thanks, Amy

Wednesday, July 28, 2010

Hi Everyone - again I have been inattentive in posting an update and I apologize. Over the last week I've had good days and not so good days - mouth sores and a cough have been the downside. However, these seem to be clearing up. For a while I was eating fruity pebbles, the broth from soup, and of course banana popsicles because of the pain but I have gotten to experience a little bit of real food the last two days - it's been wonderful!

I even got "out" a few times this week - once to a get together at Michael's professor's house and then last night we went to see the movie Inception - way over my head!!! That's all I have to say about that. Going out is kind of bittersweet. It is enjoyable but makes me miss my "normal" life.

Okay, medically we met with Dr. Rizzieri today and his PA Therese and they have decided to start me on a low dose of cytarabine (a chemo) on Friday. I will get this low dose every Monday, Wednesday, and Friday (outpatient). They are also applying for me to get another drug to take in addition to the cytarabine. I had become a little frustrated with them because I think their goal was prolonging my life when I still want to save my life. I let them know today that I will go through whatever, take chances, etc. because my goal is still remission. Also on a positive note, my white blood cell count continues to be controlled by the Hydrea.

I have a long road ahead and can't thank you enough for your support, especially in prayer,

Wednesday, July 21, 2010

Good evening,

Good : Amy's balance is almost back to normal, the mental confusion has cleared up
and she is feeling better than she was a few weeks ago.
Bad: Amy still has a bad cough, a sore throat/mouth and because of the soreness she
is having difficulty finding things she can eat that are also filling. She really wants
"normal" food, but they are too hard for her to eat. We are trying everything from Baby Foods to Ensure Milkshakes. Right now her favorite food is banana Popsicles.

The clinic is trying to give Amy two days off between appointments which is nice. She had an appointment Monday and we go back tomorrow (Thursday). We are so grateful for all those who have made their way south ( or north for the "planned one" from SC :)....) for a visit. Thank you to everyone who has sent cards - Amy had a huge stack of cards in the mail yesterday. Thank you to all the people who are praying for Amy.
Love and hugs to all...

Tuesday, July 13, 2010

Hi Everyone! I apologize for not updating sooner. Simple tasks seemed to be so hard to do - like mom said tying my shoes or anything requiring fine motor skills were and still are difficult. Even typing is somewhat of a challenge. I am still very weak and have to have help walking anywhere due to my lack of balance (my mother is very diligent about making sure someone is with me everywhere I walk). I can't say that my mouth sores are better, but we're managing my foods fairly well. I'm at one of those points where you eat to live instead of "living to eat".

In good news, we did get the weekend off and had some great company. My White Blood Cell count was 5.7 (down from 8.3ish) so at least we're still going in the right direction even without the oral chemotherapy pills.

Keep the love and keep praying, that is all I can ask for at this point, Amy

Tuesday, July 6, 2010

Good evening,

Just a brief note to let everyone know that Amy is not doing well at this time.
She is experiencing a lot of confusion, balance problems, lung issues, a bad cough, and fevers off/on. The clinic did draw blood to culture and one came back positive for infection, but the staff feels the leukemia is creating most of her problems. We will continue to go to the clinic daily and she will get IV antibiotics and blood products.

Thank you for your continued support, prayers, love and kindness.

Saturday, July 3, 2010

Hi everyone, hope you all had a good week. Unfortunately I cannot say we had the best of weeks. My mouth sores worsened and worsened to the point where swallowing was painful. I have also had a temperature since about Wednesday but they hope these two things are related. They took me off the oral chemo for now and will decide Monday where to go from here. Dr. Rizzieri said he knew of a few chemos that would not affect my mouth.

Some good news is that the chemo pill and and the Hydrea were keeping my white count down. Yesterday my white blood count with 8.7, which is very good. Pray that it doesn't take a sharp turn around though!

In non-health related news I actually have worn my wigs ! It helps that it has been cooler this week. This is a vanity thing having a wig out it public makes me me feel more normal.

Hope you all have a fun and safe 4th of July,

Monday, June 28, 2010

Hope everyone had a good weekend! We had the whole weekend off from clinic!

In some exciting news we went to a wig shop on Saturday and I used some of the money raised by my dad's golf buddies (THANKS GUYS) to buy two wigs! (Men buying me wigs - somewhat ironic). Anyway, I had ordered a wig a LONG time ago and had some of Aunt Mary Beth's but I think I may be more prone to wearing the two I bought since I got to try them on and have professional help fixing them and things.

I am at the clinic now receiving both platelets and red blood cells. I have not received red blood cells in a while so hopefully this will give my energy level a bump. My white count dropped down from over 25 to 15.8, so it's still high but going in a better direction.

For reference, a "normal" person's white count should be between 3.2-9.8. A "normal" platelet count is between 150-450, and a "normal" Hemoglobin is 12-15.5 (Sorry to the scientist reading this post - I'm not sure what the units are). My platelets get down to the single digits and usually get up in the 40's after a transfusion. Okay, enough education for today.

They raised the dosage of my chemo last Thursday and unfortunately mouth sores have started to be a problem. As much as I love to eat I do not want to compromise my health just to help with mouth sores - we will learn the things I can and cannot eat. For a good laugh: right now I'm eating a lot of raw crescent roll dough! You just never know where you may have to get your nutrition from.

My only other complaint is that our apartment still isn't staying cool. Yesterday I don't think the living room got below 80! I know this is petty because some people do not have a/c but I am just not handling the heat well at all. Hopefully our landlord can do something about this soon.

Positives: No nausea and no pain other than the mouth. We also got some good news from the Duke financial office. I don't like to write about how much things cost/financial issues but lets all add a thank you in our prayers tonight for this.

Love and thanks to all, Amy

Thursday, June 24, 2010

Hi Everyone!

I hope you all are staying cool in this heat!! Our apartment does not get much below 75 so needless to say I am ripping through the popsicles! Luckily Michael bought me a "portable" little floor a/c last year for our bedroom so it gets cool enough in there to sleep at night. I was mad at him for buying it at the time but I don't know how I would live without it now! I've never handled heat well in the first place and chemo doesn't help this much.

I'm still going to clinic every other day and getting platelets each time. Today was a day off and we just tried to stay cool and relax. It's so confusing to feel so good but be so sick - I know this is an answer to prayer and I appreciate it more than any of you can imagine.

My white count went up a little bit yesterday so they upped the dosage of my Hydrea hoping that would bring it back down. We will see what the numbers are tomorrow.

Again stay cool and enjoy the summer!

Saturday, June 19, 2010

Happy Saturday!

I've kept a promise to myself to update more than once this week. However, there really isn't a lot to update. I'm still going to the clinic every other day. This is so much nicer than going every day - I feel like I get some rest and a little bit of "normal" on the off days. Thus far I have needed platelets everyday that I have gone. However, my hemoglobin and hematocrit have stayed up so I haven't needed red blood cells in a while. My legs are still very colorful but the swelling has stayed down and I am very mobile which is super nice.

I'm still on the chemo pills which are messing with my taste buds and drying my skin out but that's about it (not a lot to complain about!!). I don't have mouth sours but things just don't taste right... If I could live off of blueberry pancakes, Popsicles, and Whopper Jr.'s I may be okay (very weird appetite I know). My white count is continuing to creep up which is not what we want to see. They put me back on the Hydrea on Thursday but this morning my white count had still gone up. They are going to wait until Monday to make any adjustments to my dosages though.

Since I went to clinic this morning I get tomorrow off which hopefully means brunch at the Cheesecake Factory... for those of you who keep up with my blog this is always a highlight of my week... hopefully the french toast is still just as good!

Much love and thanks to you all! Amy

Tuesday, June 15, 2010

Good Evening! We still do not have any results from the biopsies on my legs - nothing has "grown" from them which is good. I am walking again by myself though - I lost about 10 lbs. in 2 days so I suspect fluid had just built up on my legs and I couldn't walk because of it. It is very nice to be mobile again. Everyone was so excited when I actually walked into the clinic today. A lung x-ray last week also showed a pocket of something which caused it to hurt when I took a deep breath. For this I went on steroids and it seems to have cleared up.

They have also cut my clinic visits down to every other day instead of everyday which is a huge relief. My platelets get down to 1 or 2 but they have to balance my mental health with my physical health and this schedule is doing that. I am still taking the oral chemo pill but my white count it creeping up a little but hopefully we can right this off to being on steroids. This weekend we had lots of visitors that wore me out but were so worth it! You have no idea how much you help my mental state.

The biggest news I guess is that all my hair has fallen out again. It's been growing for about a year so this is a little disappointing but a lot cooler and easier to take care of.

As always we can't thank you enough for your prayers and support.


PS - I also ask for prayers for Julie Kiefer's family. She had a transplant about the same time as I did but passed away this morning.

Tuesday, June 8, 2010

Hi everyone, I really shouldn't be so remiss about posting. I think I've only posted 2 or 3 entries during the last two or three weeks.

First - Thanks to everyone for all the Birthday well wishes. Aunt Mary Beth and Uncle Mayfield flew in to see us for the weekend and Chris and Kelly came down for a day or two as well. I also had a nice surprise when I got home from clinic on Sunday. Some of our high school friends had come by to see us (Matt, Rachel, Anne, Travis, and Bubbie- thanks so much for coming). It was great to catch up but makes me feel so old!

I've received tons of cards and some awesome presents. Michael decided that if I couldn't make a trip to New York he would "bring New York to me." He worked it out so that 2 or 3 packages a day arrived for 2 or 3 days (I don't know if this was so much planned or how timing worked out due to last minute shopping). Anyway, I got bagels from a bagel shop in Brooklyn, a NY cheesecake, two framed black and white photographs of the Chrysler Building and Grand Central Station , several DVDs of Broadway shows, and some other things. He did pretty good!

My legs are still very "colorful" and swollen. I am getting better at using the walker/wheelchair but It would be nice to just get up and walk. They did a "punch" biopsy and a "fine needle" biopsy of the spots of my legs but we do not have any results for those, other than the fact that this is NOT Leukemia in the skin. So hopefully we will find out more about that soon. I have been having to go to the clinic everyday because I continue to need platelets everyday.

Other than having difficulty getting around, I really do feel good. I stay tired a lot but that is always a part of the big picture. Thanks so much for the Birthday wishes, praryers, etc., Amy

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

Thursday, April 29, 2010

Big thanks for all the prayers that were sent up for me tonight! By the sound of it God had a lot of people to listen to. I feel so very blessed by each and every one of you. When I was diagnosed in January of 2009 I was blown away by the immediate support I received. Knowing it would be a long road I thought that support would wain over time. Now it's been an even a longer road than originally anticipated and all of you (and probably even more) are still right here with me. For that I am so very grateful.

Love and thanks to all,

Tuesday, April 27, 2010

The clinic visit today went well. Our plan is to try another clinical trial for a new drug which will start sometime in May. The new drug is conceptually similar to STA-9090 but a little different. In the meantime I will finish up one more week of STA-9090. Dr. Rizzieri thinks that although my counts are rising, the drug still may be keeping the Leukemia from going out of control. After this week, we will keep my counts down with the drug Hydrea until the new trial starts. This will be my third clinical trial so as they say maybe "third time's a charm."


Friday, April 23, 2010

I hate having negative posts but unfortunately this will probably be one of them. We did not get very good news today at the clinic. My white count increased by another point and the percentage of blasts in my blood went up to 68%. (It had been consistently staying around 50%). So it looks like the STA-9090 is no longer working on my Leukemia.

Dr. Rizzieri came and talked to us for a while and decided to go ahead and give me my treatment today and recheck everything again on Tuesday. In the meantime, he will be looking into other options for treatment. He said there is another trial opening up in May for a drug that is theoretically similar to STA-9090 but different. That may be one option for me. They plan on putting me on the medicine Hydrea to keep my white count down until we have a plan set into motion.

In spite of this, I'm still feeling really well and I'm also thankful that I have a doctor who will keep trying and keep coming up with plans even if the end result is just prolonging my life.

I have to end on a positive note: Peanut Butter Pie from TGIFridays!!!

Bon Appetit,

Tuesday, April 20, 2010

Well Mom and I just finished watching the movie Julie & Julia and I'm sorry that I don't have more exciting things to blog about. However, if I were to try to cook my way through Julia Child's cookbook it probably would be quite interesting for very different reasons than in the movie (I cannot cook. Bake, yes. But cook, no.)

I went to clinic today and had my usual treatment plus received a unit of platelets. My hemoglobin was still high from the infusion on Friday so no red blood cells today. I can definitely tell if my hemoglobin is low/high as it corresponds with how much energy I have. However, my white count took a big jump to 6.5 (it had been staying around 3.5-4.5) so this is worrisome to me. The PA I see in clinic is basically there to treat the symptoms and not the big picture so he didn't really have much insight into this jump. He did however say that he would discuss it with Dr. Rizzieri and my "main PA" Therese this afternoon. So hopefully we'll know more Friday. Dr. Rizzieri did say one time that a white blood count at or below 7 would satisfy him, but I still don't like the big jump.

I did come across one good thing today though: Reese Cup Milkshakes from The Cookout. After having one I no longer think I will be satisfied with a Reese Cup blizzard from Dairy Queen. Just wanted to end on a positive note,

Much thanks to you all, Amy :)

Friday, April 16, 2010

Things are still status quo which is good. I had my usual treatment today as well as infusions of red blood cells and platelets. My hemoglobin was low but not at transfusion level so the PA left it up to me as to whether to get the unit of red blood cells so I said bring it on because a transfusion always gives me more energy.

Last night I had some muscle spasms in my right rib area. This is where some of my shingles were located back in December. The PA thinks this is just a result of damage done to the nerve endings by the shingles. So it could creep up at any time and we just have to try to treat it with pain medication and muscle relaxers. Overall, I'm still feeling really good which is a lot to be thankful for!

Have a good weekend, Amy

Tuesday, April 13, 2010

Hi everyone! I got the usual treatment today plus infusions of platelets and red blood cells. We got the bone marrow biopsy results and are a little disappointed that the percentage of Leukemia cells had gone up a bit. It was not an outrageous percentage though so let's just hope and pray that having two treatments a week will really beat down the leukemia.

I'm still taking Cipro as my antibiotic but it has not bothered me like it did before. The treatments give me some stomach aches the day or two afterward (mostly in the mornings) but other than that I am fortunate to really feel good.

I wish you all a good rest of the week! Amy

Monday, April 12, 2010

Quick Note: If you are free there is a blood drive at the Clifton Forge Moose from 11:00 - 5:00 tomorrow (Tues. 4/13)

Saturday, April 10, 2010

Hi everyone! I got a treatment yesterday, this is the first time I've had two treatments in one week. Other than some stomach aches this morning things are going well. My hemoglobin was pretty low yesterday but not low enough for a transfusion. I wish they had given me red blood cells because my hemoglobin will probably drop really low by Tuesday. Hopefully this won't make me too tired. We should have some results from the bone marrow biopsy sometime this week. This always makes me nervous.

Hope everyone has a great weekend!

Tuesday, April 6, 2010

Well today has been a busy day. I got to the clinic and they informed me I had to go to Duke South to have a chest x-ray and EKG. So I had blood drawn and we headed over there. After getting back to the clinic I had a bone marrow biopsy... not too bad. Now I am getting a unit of platelets, some potassium, two units of red blood cells and a treatment. So I am keeping the nurses busy. The last two days I have been completely drained of energy so I was glad when they told me my hemoglobin and hematocrit were low. This means there was at least a reason for my tiredness and it wasn't just something "normal". I should feel much better after getting the red blood cells. I'm going back on Cipro for an antibiotic, I didn't feel great on this drug, but at least I didn't have the nausea/vomiting like the last two antibiotics. So hopefully this will be somewhat better.

Today's treatment starts my twice a week protocol so I will have another treatment on Friday. (We usually came on Tuesdays and Fridays anyway). I pray that the small side effects I have from 1 treatment a week continue to only be small side effects. Obviously we are also hoping twice a week treatments will have more of an affect on my Leukemia cells.

Michael and Matt are driving back from Indy today so wish them a safe trip. I think they had a great time. Matt did of course because Duke won and Michael being a UNC fan was just happy to be there.

Hope you all are having a wonderful week,

Sunday, April 4, 2010

I Just wanted to wish everyone a Happy Easter! We have so much to celebrate today and I hope you all have friends and family to celebrate with. I was too tired to make the trip to VA so I miss seeing a lot of my family but I'm glad to have mom and dad here with me.

I've felt good yesterday and today but the end of the week was kind of rocky. The antibiotics just really mess with my stomach and give me lots of nausea... so I stopped taking it. At first I followed everything the doctors told me to do, but after 14 months I've realized it's my body and I can make some decisions on my own - whether they're the right decisions or not. Hopefully they will find an antibiotic that will protect me but not make me feel so bad.

Hope everyone has a joyous day!


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

Tuesday, February 23, 2010

I'm glad to hear that I'm not the only one who watches curling (I can't believe I just admitted that). You turn to the olympics and you're like "oh it's just curling" and then you can't change the channel because you get hooked on this weird stone sliding sport. However, I do not understand the rules or the physics of the sweeping???

My visit to the clinic yesterday went well. I had my seventh treatment and also received an infusion of platelets. The nurse practitioner who organizes/oversees all of the clinical trials for Leukemia came by and said the drug company is really interested in me. I'm one of the only ones whose Leukemia is staying in check and not having a lot of side effects. They even requested extra blood samples from me so they could further analyze my cells to see what's different about my Leukemia than other Leukemias that have continued to multiply despite of the drug. Next week ends "cycle 2" and we'll make a decision about how to proceed with cycle 3. We thought the dose would just go up but they are also considering giving me the same dose of the drug but twice a week instead of once a week. I have no idea how to decide which of these would be better so I will probably defer to Dr. Rizzieri's judgement.

It's still a little frustrating to me that the doctors are excited that my Leukemia is somewhat "controlled" by this drug. Of course that is a good thing, but at the same time I want to think about getting rid of the cancer instead of just keeping it from growing. However, I will take what I can get.

As always, much thanks, Amy

Sunday, February 21, 2010

So we have had somewhat of a usual week here. I had a treatment on Tuesday along with infusions of red blood cells and platelets on both Tuesday and Friday. My incision site is healing well and probably will not even need to be packed much longer.

Michael and I made the trip to Matthew's basketball game at Emory and Henry on Saturday. It was nice to get out and do something normal but even something as simple as riding in the car wore me out. I feel my energy levels are decreasing with each treatment but hopefully this is just in my mind. I think I have two more treatments before the dosage of the drug will be increased. I'm optimistic that the higher dose will have more affect on the leukemia but a little worried that the little side effects I have from the current dose will become big side effects. (If any of my former English teachers read this please ignore that sentence if I misused affect/effect).

In other good news, the real estate agent found a renter for our house in Indiana. We would rather have found a buyer but at this point a renter with a 12 month lease gives us relief at the moment. The guy renting our house is the new associate dean of student affairs at Purdue so I wonder how he feels having two 25 year old grad students as his landlord.

Much thanks to all! Amy

PS - There was no illegal activity that led to my loss of internet. Just a faulty lamp, some sparks, and a blown power fuse. I don't have quite the exciting, undercover life that my South Carolina (planned) cousin does.

Monday, February 15, 2010

Good morning! I apologize for not posting but I have not had internet since Friday. Things are still going pretty much the same. I will get my sixth treatment of the trial drug on Tuesday. They will also do blood work on Tuesday and Friday to see if I need platelets or red blood cells. On saturday, the nurse showed Michael how to unpack and repack my incision so I do not have to go to clinic everyday anymore! I can't even look at the site so I'm glad there are people out there that can handle that sort of thing. My most recent bone marrow biopsy showed that the percentage of Leukemia cells was about the same as the one before, maybe a small decrease. The doctors didn't expect much of a change since the biopsies were so close in time. They are also encouraged that the drug is at least keeping such an aggressive Leukemia from growing.

Belated Happy Valentine's!

Tuesday, February 9, 2010

Hi Everyone! It's more of the same here in Durham. I had my 5th treatment today of the trial drug. In addition to that I received platelets and potassium. I surprisingly did not need red blood cells. My hemoglobin was still at a good level even though I had not been given an infusion of red blood cells since last Tuesday. I am still having to go to the clinic everyday to have the site where they removed my hickman repacked and dressed - it makes it quite sore. This will probably go on for several weeks. The surgeon thought packing it instead of stitching it up would reduce the chance of infection. Basically packing lets it heal from the inside out.

Michael got back from his Europe trip on Sunday. He had a great trip with lots of good academic and cultural experiences. I have to say the chocolate we get in the states doesn't quite compare to the Belgian chocolate he brought me :).

Everyone in VA stay safe in the snow... I know you guys are sick of it!

Friday, February 5, 2010

It's a yucky rainy day here in Durham but it's been a great day inside. This morning I had a little "mini surgery" to remove the cuff left behind from my Hickman catheter. All went well and I am not even sore. The downside is that I have to run by the clinic each day to have the dressing changed. After a nice nap Mary Beth gave me a fantastic pedicure and manicure so I was very pampered today! It was a nice break after such a hectic week. I have a treatment Tuesday and they should have some results from the bone marrow biopsy by the end of the week. There isn't much else to report at this point.

Bonsoir! (Good Evening - Since Michael is now in Belgium)

Tuesday, February 2, 2010

So we had a long clinic visit today and it is going to be a busy week. Today I received STA-9090 (the trial drug), platelets, red blood cells, and a dose of IV daptomycin (an antibiotic). They decided to start the daptomycin because the site where my hickman central line was is getting red. The hickman was taken out back in September but still hasn't healed. The "cuff" that held the line in place internally only partially came out when the hickman was pulled out so this is probably the reason for the slow healing. I am scheduled to have the rest of the cuff taken out on Friday. We will also have to go to clinic everyday to get the IV antibiotic because my student insurance does not cover home infusions. In addition to all of that I have a bone marrow biopsy on Thursday. So we have lots of medical stuff to do this week.

Today's treatment was the last treatment of the "first cycle" of the clinical trial, however the doctors have decided not to take a break between cycles since I've handled the drug very well with very few side effects. So "cycle two" will start next week. I'm glad there won't be any time in between. I want to keep beating the Leukemia down instead of giving it a break.

I also forgot to report that I had my first "hair cut" last week :). Mom just trimmed it in the back around my neck to keep it from becoming anything close to a mullet. My hair did not fall out with the round of chemo that I had in December so it has been growing steadily since about August. Mom says it looks like an actress from the old show Northern Exposure (I'm too young for that) or a news contributor on MSNBC (never watched that channel) - so I have no idea who to compare it to.

Much Thanks! Amy

P.S. - I finally figured out how to make it easier to comment on the blog, first go to the "comments" page then:

Enter your comment in the box
For "Comment as:" select name/URL
Enter your name, leave the URL blank, click continue
Click post comment
(you may have to click post comment twice)

Saturday, January 30, 2010

Happy Snowy Saturday! We got snow in North Carolina! It's very funny how different the atmosphere is when it snows in North Carolina as opposed to snowing in Indiana. This amount of snow probably would not even close schools out there yet no one was out and about today down here and a lot of restaurants were even closed. Dad braved the storm to go out and give platelets this morning at the red cross center. They were very excited that he made an appointment and came because they had so many cancellations because of the snow. Keeping a full schedule of platelet donors is important because platelets cannot be frozen and only have a shelf life of 5 days! So if there is a day or two with no donors that's a big deal.

Speaking of platelets I received a bag of platelets on Friday at the clinic and that was all. All my other counts were acceptable to get me to Tuesday. So I have a few days off and then go Tuesday to have my fourth and final treatment of this cycle. We do not know how long there will be between the first and second "cycle" though, the protocol for the study is vaguely written so that the doctor can decide. So hopefully we will find out more soon. I also have another biopsy sometime this week.

Michael made it to the Netherlands at about 3 am this morning and "called" me on the computer. He said the flights were good and didn't seem too long because he watched two movies. I will have lots of company this week to keep me occupied. Dad is here now, grandma will come tomorrow or Monday depending on the weather, and Aunt Mary Beth flies in on Thursday so it should be a great week spending time with family.

Enjoy the snow (safely) and thanks for always being there!