tag:blogger.com,1999:blog-70596930202878828722024-02-21T09:18:34.597-05:00Amy's BlogAmysBloghttp://www.blogger.com/profile/18414356264436597836noreply@blogger.comBlogger205125tag:blogger.com,1999:blog-7059693020287882872.post-86039809328368605872010-10-30T06:57:00.002-04:002010-10-30T07:29:57.874-04:00I guess I feel the need to write one last entry into Amy's blog.<br /><br />Amy passed away Oct. 26, 2010 .<br />Her obituary can be seen at<br /> <a href="http://www.nicelyfuneralhome.com/obituary.pl?command=displayobit&instance=1514">http://www.nicelyfuneralhome.com/obituary.pl?command=displayobit&instance=1514</a><br /><br />Amy's service was touching and beautiful.<br />The day was a <span id="SPELLING_ERROR_0" class="blsp-spelling-corrected">gorgeous</span> autumn day.<br />The time with family and friends is something we will always remember.<br /><br /><br />Thank you to everyone who has followed her blog and supported us thoughout this journey.AmysBloghttp://www.blogger.com/profile/18414356264436597836noreply@blogger.com34tag:blogger.com,1999:blog-7059693020287882872.post-21115139530851550672010-10-25T10:28:00.002-04:002010-10-25T11:11:05.817-04:00This 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 <em><span id="SPELLING_ERROR_0" class="blsp-spelling-error">sporcle</span></em> Saturday night ( they do pretty good together - Amy gets the newer answers and Greg can answer most of the "oldies"). <br /><br />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 :<br /> 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.<br /> Thank you to our "only planned cousin in South Carolina" for the many wonderful care packages... nothing goes to waste in them :)<br /> Thank you to Joleen, John, <span id="SPELLING_ERROR_1" class="blsp-spelling-error">Teagan</span>, Phyllis, Bucky, Wanda, Janice, Bonnie, James, Roberta, David, Gale, Jared, <span id="SPELLING_ERROR_2" class="blsp-spelling-error">Webbs</span> and <span id="SPELLING_ERROR_3" class="blsp-spelling-error">Feazells</span>.... everyone ...who worked, helped, ate, stopped by the Bean Supper held for Amy. Roberta has some pictures on her <span id="SPELLING_ERROR_4" class="blsp-spelling-error">facebook</span> page and it looks like everyone had plenty of good food and company. Wish we could have been there.<br /> Thank you to everyone who's praying for Amy. We do feel strengthened by your love and encouraging words/thoughts sent our way.<br /><br />love to all<br />KathyAmysBloghttp://www.blogger.com/profile/18414356264436597836noreply@blogger.com29tag:blogger.com,1999:blog-7059693020287882872.post-23463106958750839782010-10-22T10:12:00.004-04:002010-10-22T14:58:37.874-04:00Good Morning,<br /><br />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 <span id="SPELLING_ERROR_0" class="blsp-spelling-corrected">alleviate</span> it. She is taking <span id="SPELLING_ERROR_1" class="blsp-spelling-error">augmentin</span> for any infection, but they may need to up her pain medication dosage to help with the pain she is experiencing.<br /><br />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.<br /><br />This week we have watched old movies, played games and Christmas shopped online.<br />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!<br /><br />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 :) )<br /><br />Love and hugs to everyone,<br />KathyAmysBloghttp://www.blogger.com/profile/18414356264436597836noreply@blogger.com15tag:blogger.com,1999:blog-7059693020287882872.post-60672209956852173222010-10-19T07:28:00.003-04:002010-10-19T10:37:55.239-04:00Good morning, <div><br /></div><div>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. </div><div><br /></div><div>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. </div><div><br /></div><div>Yesterday we were lazy. We watched TV and played games on the computer. We have become hooked on a website called <span id="SPELLING_ERROR_0" class="blsp-spelling-error">Sporcle</span> - 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 <span id="SPELLING_ERROR_1" class="blsp-spelling-corrected">disturbing</span> :), Babes in <span id="SPELLING_ERROR_2" class="blsp-spelling-error">Toyland</span>, 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 ). </div><div><br /></div><div>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.</div><div></div><div>love to all</div><div>Kathy</div><div><br /></div><div><br /></div><div><br /></div><div></div>AmysBloghttp://www.blogger.com/profile/18414356264436597836noreply@blogger.com13tag:blogger.com,1999:blog-7059693020287882872.post-22119365826186698622010-10-17T07:48:00.002-04:002010-10-17T09:17:18.271-04:00Good morning.<div><br /></div><div>Thank you, to everyone, for your prayers, love and support when it was needed so much.</div><div><br /></div><div>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. </div><div><br /></div><div>Even with all that has been going on the last few days, it has been a good weekend.</div><div>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. </div><div><br /></div><div>Hope everyone is able to get out and enjoy the wonderful autumn weather. We love the cooler temperature. </div><div><br /></div><div>love to all</div><div>Kathy</div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div>AmysBloghttp://www.blogger.com/profile/18414356264436597836noreply@blogger.com2tag:blogger.com,1999:blog-7059693020287882872.post-44830727864237357212010-10-15T22:22:00.004-04:002010-10-15T23:15:49.956-04:00Today started off bad.<div><br /><div> 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 <span class="blsp-spelling-corrected" id="SPELLING_ERROR_0">passenger's</span> 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 <span class="blsp-spelling-error" id="SPELLING_ERROR_1"><span class="blsp-spelling-error" id="SPELLING_ERROR_0">ABMT</span></span> 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 <span class="blsp-spelling-error" id="SPELLING_ERROR_1">popsicles</span> 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.</div><div>*We would like to ask for prayers - there are some very tough decisions to be made.</div><div>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. </div><div>Thank you,</div><div>Kathy</div><div><br /><div><br /></div></div></div>AmysBloghttp://www.blogger.com/profile/18414356264436597836noreply@blogger.com7tag:blogger.com,1999:blog-7059693020287882872.post-16623268203720924632010-10-13T18:02:00.003-04:002010-10-13T20:29:09.218-04:00<div>Warning: not a good update</div><div><br /></div>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. <div><br /></div><div>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. </div><div><br /></div><div>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. </div><div><br /></div><div>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. </div><div><br /></div><div>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.</div><div><br /></div><div>Amy</div>AmysBloghttp://www.blogger.com/profile/18414356264436597836noreply@blogger.com10tag:blogger.com,1999:blog-7059693020287882872.post-1610748355073609292010-10-04T14:06:00.002-04:002010-10-04T14:24:41.065-04:00Hi 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). <div><br /></div><div>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.)</div><div><br /></div><div>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. </div><div><br /></div><div>Hope you all have a wonderful week,</div><div>Amy</div><div><br /></div><div><br /></div>AmysBloghttp://www.blogger.com/profile/18414356264436597836noreply@blogger.com9tag:blogger.com,1999:blog-7059693020287882872.post-29271602023082169562010-09-29T17:57:00.002-04:002010-09-30T12:57:53.285-04:00Hello 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.<div><br /></div><div>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.</div><div><br /></div><div>Hope you all are having a good week,</div><div>Amy</div>AmysBloghttp://www.blogger.com/profile/18414356264436597836noreply@blogger.com9tag:blogger.com,1999:blog-7059693020287882872.post-82234449265061518402010-09-19T20:45:00.002-04:002010-09-19T21:00:32.765-04:00Wow - 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.<div><br /></div><div>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. </div><div><br /></div><div>Hope you all have a good week,</div><div>Amy</div>AmysBloghttp://www.blogger.com/profile/18414356264436597836noreply@blogger.com6tag:blogger.com,1999:blog-7059693020287882872.post-34996126104186672852010-09-11T21:44:00.003-04:002010-09-11T22:07:22.065-04:00Hi 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 <span class="blsp-spelling-error" id="SPELLING_ERROR_0">mucositis</span>, if not they will have to put me on stronger antibiotics.<div><br /></div><div>Now for the answer to the million dollar questions "are they here yet?" YES</div><div>The <span class="blsp-spelling-error" id="SPELLING_ERROR_1">Revlimid</span> came Thursday so I've had 3 doses of it so far and haven't noticed any side effects yet. </div><div><br /></div><div>Thanks for all of prayers and support, Amy</div><div><br /></div><div>One final note: </div><div><span class="blsp-spelling-error" id="SPELLING_ERROR_2">JMU</span> 21 Virginia Tech 16 - I have never been more proud to be a <span class="blsp-spelling-error" id="SPELLING_ERROR_3">JMU</span> Duke!</div><div><br /></div><div><br /></div>AmysBloghttp://www.blogger.com/profile/18414356264436597836noreply@blogger.com7tag:blogger.com,1999:blog-7059693020287882872.post-76047873933346864662010-09-04T17:46:00.006-04:002010-09-04T21:11:32.549-04:00<span class="Apple-style-span" style="font-size: medium;">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.</span><div><span class="Apple-style-span" style="font-size: medium;"><br /></span></div><div><span class="Apple-style-span" style="font-size: medium;">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:</span></div><div><span class="Apple-style-span" style=" color: rgb(51, 51, 51); font-family:'lucida grande', tahoma, verdana, arial, sans-serif;font-size:11px;"><span id="myphotolink" style="display: table; margin-top: auto; margin-right: auto; margin-bottom: auto; margin-left: auto; "><img src="http://sphotos.ak.fbcdn.net/hphotos-ak-snc3/hs573.snc3/31261_1400161038220_1058103352_1176142_8051519_n.jpg" width="200" height="200" id="myphoto" style="border-top-width: 0px; border-right-width: 0px; border-bottom-width: 0px; border-left-width: 0px; border-style: initial; border-color: initial; background-color: rgb(255, 255, 255); float: left; " /><br /></span><span class="Apple-style-span" style="font-family:Georgia, serif;color:#000000;"><span class="Apple-style-span" style="font-size: medium;">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)</span></span></span></div><div><span class="Apple-style-span" style="font-size: medium;"><br /></span></div><div><span class="Apple-style-span" style=" color: rgb(51, 51, 51); font-family:'lucida grande', tahoma, verdana, arial, sans-serif;"><span class="Apple-style-span" style="font-family:Georgia, serif;color:#000000;"><span class="Apple-style-span" style="font-size: medium;">Hope you all have a good labor day weekend,</span></span></span></div><div><span class="Apple-style-span" style=" color: rgb(51, 51, 51); font-family:'lucida grande', tahoma, verdana, arial, sans-serif;font-size:11px;"><span class="Apple-style-span" style="font-family:Georgia, serif;color:#000000;"><span class="Apple-style-span" style="font-size:medium;"><span class="Apple-style-span" style="font-size: medium;">Amy</span><br /></span></span><span id="myphotolink" style="display: table; margin-top: auto; margin-right: auto; margin-bottom: auto; margin-left: auto; "><br /></span><span id="myphotolink" style="display: table; margin-top: auto; margin-right: auto; margin-bottom: auto; margin-left: auto; "><br /></span></span></div><div><br /></div><div><br /></div>AmysBloghttp://www.blogger.com/profile/18414356264436597836noreply@blogger.com9tag:blogger.com,1999:blog-7059693020287882872.post-36048479720521257552010-08-30T14:10:00.004-04:002010-09-01T14:25:25.521-04:00Hello 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.<div><br /></div><div>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). </div><div><br /></div><div>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. </div><div><br /></div><div>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.</div><div><br /></div><div>Hope you all are having a good week,</div><div>Amy</div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div>AmysBloghttp://www.blogger.com/profile/18414356264436597836noreply@blogger.com11tag:blogger.com,1999:blog-7059693020287882872.post-18616471364060869142010-08-25T17:55:00.002-04:002010-08-25T18:32:24.219-04:00Good 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). <div><br /></div><div>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.</div><div><br /></div><div>Thanks for all of your prayers, cards, well wishes,...</div><div>Amy</div>AmysBloghttp://www.blogger.com/profile/18414356264436597836noreply@blogger.com8tag:blogger.com,1999:blog-7059693020287882872.post-25682296748938055862010-08-23T20:20:00.003-04:002010-08-23T20:41:49.107-04:00So 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.<div><br /></div><div>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.</div><div><br /></div><div>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.)</div><div><br /></div><div>Hope you all have a good week and ENJOY going back to school!</div><div>Amy</div><div><div> </div></div>AmysBloghttp://www.blogger.com/profile/18414356264436597836noreply@blogger.com5tag:blogger.com,1999:blog-7059693020287882872.post-34876982011899064472010-08-19T16:13:00.002-04:002010-08-19T16:47:32.416-04:00Hello! 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.<div><br /></div><div>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.</div><div><br /></div><div>Hope your week is going well and everyone is having fun getting ready to go back to school :),</div><div>Amy</div><div><br /></div><div><br /></div>AmysBloghttp://www.blogger.com/profile/18414356264436597836noreply@blogger.com5tag:blogger.com,1999:blog-7059693020287882872.post-15452003441974822472010-08-14T20:03:00.004-04:002010-08-14T20:10:23.724-04:00Hi 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.<div><br /></div><div>Much thanks for your prayers, </div><div>Amy<br /><div><br /></div><div><br /></div></div>AmysBloghttp://www.blogger.com/profile/18414356264436597836noreply@blogger.com5tag:blogger.com,1999:blog-7059693020287882872.post-41801910266238290052010-08-11T20:55:00.006-04:002010-08-11T21:44:26.597-04:00So 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.<div><br /></div><div>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.</div><div><br /></div><div>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.</div><div><br /></div><div>As always, thanks for following me, praying for me, and everything you do,</div><div>Amy</div>AmysBloghttp://www.blogger.com/profile/18414356264436597836noreply@blogger.com6tag:blogger.com,1999:blog-7059693020287882872.post-31812123043435651042010-08-09T13:16:00.006-04:002010-08-10T18:22:50.474-04:00I 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 -<a href="http://www.amazon.com/Naked-Sudoku-Philip-Riley/dp/1402765061/ref=sr_1_1?ie=UTF8&s=books&qid=1281478565&sr=8-1">here</a> - okay I'm done being a math nerd). <div><br /></div><div>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.</div><div><br /></div><div>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).</div><div><br /></div><div>Hope you are all having a good week and as always thanks for everything you do!</div><div><br /></div><div>Amy</div><div><br /></div><div>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)<br /><div><br /></div><div><br /></div></div>AmysBloghttp://www.blogger.com/profile/18414356264436597836noreply@blogger.com8tag:blogger.com,1999:blog-7059693020287882872.post-72881941064745666372010-08-04T11:11:00.003-04:002010-08-04T12:06:21.337-04:00So, this post could either be titled: "Amy's terrific tumble" or "Amy's stay on the prison ward of the Trauma Unit"<div><br /></div><div>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.</div><div><br /></div><div>So that's the story of the fall. </div><div><br /></div><div>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.</div><div><br /></div><div>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.</div><div><br /></div><div>As always thanks for keeping up with me and for everything you do,</div><div>Amy</div><div><br /></div>AmysBloghttp://www.blogger.com/profile/18414356264436597836noreply@blogger.com29tag:blogger.com,1999:blog-7059693020287882872.post-84891831046497507892010-08-03T09:32:00.002-04:002010-08-03T10:03:27.244-04:00Hi 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.<div><br /></div><div>I've had two doses of <span class="blsp-spelling-error" id="SPELLING_ERROR_0">cytarabine</span> 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...)</div><div><br /></div><div>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.</div><div><br /></div><div>Hope you all are well and enjoying your summer - pray my mouth sores go away!</div><div>Thanks, Amy</div><div><br /></div><div><br /></div><div><br /></div>AmysBloghttp://www.blogger.com/profile/18414356264436597836noreply@blogger.com12tag:blogger.com,1999:blog-7059693020287882872.post-32982394021529964992010-07-28T18:34:00.002-04:002010-07-28T19:04:15.665-04:00Hi 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!<div><br /></div><div>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.</div><div><br /></div><div>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.</div><div><br /></div><div>I have a long road ahead and can't thank you enough for your support, especially in prayer,</div><div>Amy</div><div><br /></div><div><br /></div>AmysBloghttp://www.blogger.com/profile/18414356264436597836noreply@blogger.com10tag:blogger.com,1999:blog-7059693020287882872.post-41064442501439174072010-07-21T20:13:00.002-04:002010-07-21T21:06:22.345-04:00Good evening,<div><br /><div>Good : Amy's balance is almost back to normal, the mental confusion has cleared up </div><div><span class="Apple-tab-span" style="white-space:pre"> </span>and she is feeling better than she was a few weeks ago.</div><div>Bad: Amy still has a bad cough, a sore throat/mouth and because of the soreness she</div><div><span class="Apple-tab-span" style="white-space:pre"> </span>is having difficulty finding things she can eat that are also filling. She really wants</div><div><span class="Apple-tab-span" style="white-space:pre"> </span>"normal" food, but they are too hard for her to eat. We are trying everything from <span class="Apple-tab-span" style="white-space:pre"> </span>Baby Foods to Ensure Milkshakes. Right now her favorite food is banana<span class="Apple-tab-span" style="white-space:pre"> </span><span class="blsp-spelling-corrected" id="SPELLING_ERROR_0">Popsicles</span>.</div><div><br /></div><div>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. </div><div>Love and hugs to all...</div><div>Kathy </div><div><br /></div><div> <span class="Apple-tab-span" style="white-space:pre"> </span></div></div>AmysBloghttp://www.blogger.com/profile/18414356264436597836noreply@blogger.com14tag:blogger.com,1999:blog-7059693020287882872.post-69452299981488061732010-07-13T20:17:00.004-04:002010-07-13T21:47:45.196-04:00Hi 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 <span id="SPELLING_ERROR_0" class="blsp-spelling-corrected">diligent</span> 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". <div><br /></div><div>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.</div><div><br /></div><div>Keep the love and keep praying, that is all I can ask for at this point, Amy</div>AmysBloghttp://www.blogger.com/profile/18414356264436597836noreply@blogger.com17tag:blogger.com,1999:blog-7059693020287882872.post-53166834162811466622010-07-06T21:19:00.002-04:002010-07-06T21:29:00.220-04:00Good evening,<div><br /><div>Just a brief note to let everyone know that Amy is not doing well at this time.</div><div>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.</div><div><br /></div><div>Thank you for your continued support, prayers, love and kindness. </div><div>Kathy</div><div><br /></div></div>AmysBloghttp://www.blogger.com/profile/18414356264436597836noreply@blogger.com26