welovedonna.com

Ok, I started this update on Thursday morning but fell asleep while typing it. Thankfully my husband saved it for me when he moved the computer and tucked me back in bed.  I fully intended to get back to it in the afternoon but things just didn’t work out there.  I did update it yesterday 3 times but lost wifi each time I went to publish therefore losing my update. So today, I’m finishing it out in word and copying it the website.  Anyway, here’s what wend down………

Mon., Tue., and Wed. are somewhat of a blur. I kept spiking a fever that we struggled to keep under control. I laid on ice packs 24/7 and took 2 tylenol, then 2 hours later, 1 motrin, and repeated that schedule for 3 days. I would get delirious as the fevers would rise and I’d want to sleep so my husband stayed up pretty much the whole time, checking on me and gathering my temperature readings every 1/2 to 1 hour. He is exhausted but I think we finally got it licked. I did however develop a bloody nose that was pretty constant and some mild bleeding from my gums. I suspect low platelets again. We went to the oncologist on Tue. and found my platelets were back at 4 so Wed. I had a transfusion. Wednesday night they delivered another antibiotic to add to the cocktail. An IV bag to be given every 24 hours for now but with plans to up that to every 12 hours. Thursday, the fever stayed down all day and I got some long overdue tasks accomplished. In the late afternoon the temp started to rise again and out came the cold packs. The bleeding had stopped so I at least got eliminate the cold pack off my face. Friday morning I went in for my regular blood draw and dr. visit. Due to my low platelets, some blood had pooled and settled around the rectal area and swelling had occured. It looked like it may even be abscessed.  After my transfusion, my platelet count only climbed from 4 to 5.  Also after a week of neupogen shots my whites actually went from 0.2 down to 0.0. These were all concerns of the Dr. However when he heard I hadn’t had a bowel movement since Tuesday, he pretty much told me I needed to be in the hospital. Dr. D with all his drama said, “If you get colitis in a neutropenic state, it will be fatal.” So off we went to St. Rose Dominican Hospital-San Martin campus. Orders had been faxed to the ER and we were carrying orders as well. We could have waited at the cancer center for them to get pre-authorization and just admit me skipping the ER but the Dr. didn’t prefer this method. Well….next time he’ll just have to deal with it because coming thru the ER created problems of it’s own and cost an extra $150. But hindsight is 20/20 right? Anyway, I started out confident we made the right decision but by Sat. morning we weren’t sure. The antibiotics they gave me are exactly what was administered at home. I checked my temp more often then the nurses here do. The only thing changed is they gave me milk of magnesia every 2 hours until a bowel is produced. And they have stronger pain meds. I had an ex-ray of my chest, an ex-ray of my abdomen and a ct scan of my sinuses. The abdomen showed no signs of colitis and not much impaction. Dr. D said it’s not that bad, you poo, you go. Yeah right, I wished it worked that way but now the “team” of doctors are on board and I’m settling in for at least a week. The infectious disease dr. came in, and as all i.d. dr.s do, went straight for my port. I assured here the infection was not there but we had plenty of other candidates. After a while she asked to see my backside and exam it. When she was thru she said, “I’m sending a surgeon in to look at that,” What???? What surgeon would do non-emergency surgery on someone with 0.0 whites? She also said she would look at the CT scan and see if surgery was necessary on my sinuses. Again…..what? Anyway, things had been moving along well and I had been feeling well but before this dr. left, she changed up half my meds adding new ones I haven’t had before and discontinuing what we thought was working. By mid-afternoon, I was exhausted and couldn’t keep my eyes open. My fever spiked to over 102 and my blood pressure fell. I started hearing talk of ICU. I asked them for cold packs but at first they said no they don’t really do that. I eventually convinced them and soon there after the fever broke. Then after 2 days of laxatives, I finally produced. The nurse immediately showed up with dilloted for the pain. God Bless Her cause that was excruciating. She did insist on taking pictures of my bum because things were out of control and she didn’t the dr.s were addressing in so she felt if there was a picture in the front of my file, they would have to deal with it and I wouldn’t have to go thru 5 painful exams. That’s basically where we are now. Just waiting to see if the new cocktail helps anything and trying to stay as comfortable as possible while doing it.

On the MDA front, my sister was matched with 8 out 10 markers which I thought was great but they say they really want at least a 10 out of 10 or a 14 out of 14. I guess some markers are more important than others and the 2 Sheila is lacking are too important to ignore. They found some core blood that they want to further test and one possible donor that needs to be looked at harder. I should know in a couple of weeks. However over the weekend, Dr. Wu stood in for Dr. D here at the hospital and we started talking about transplants. Come to find out, that is what he did back in New York before coming to Vegas. He was discouraged that they wouldn’t look closer at Sheila with an 80% match. We discussed the core blood risks and non-related donor risks. I’m going to try to get a copy of Sheila’s blood work and have him give me a second opinion and then I want to go outside the state for a third opinion.  It’s too important not to.

Anyway, my sprits are up. My fight is back and I’m ready to deal with whatever I need to. I’m a planner and I hate the unknowns, but I’m learning to trust and have faith and to let go.

Thank You’s to everyone wishing me Happy Birthday and for praying for me. I’ll let you all know as soon as I know if any bone marrow drives will be coordinated and the process necessary if you want one in your area.

Sorry it’s been a while since my last update. We couldn’t get our wireless to work in the house and sitting at the computer desk was just too much. But all is well know and I’m back on line. I was supposed to get released from the hospital last Thursday but after they had de-accessed my port and put me thru a lot of discharge drama, the infectious disease doctor that had been taking care of me pulled the plug and said no way. We had nurses and doctors scrambling to get answers and in the end it turned out to be miscommunication between some of the doctors but it still resulted in me staying at the hospital another night.  Friday, I arrived home around 11 am and the home health care was due to come out between noon and 2. Around 3:30 they showed up with my i.v. antibiotics and wanted to do a dressing change on my picc line. I assured them my husband could do the dressing but they insisted as they had a new nurse in training. That should have been my first clue. Everything with my pic had been fine until that moment. I swear he pulled it out a couple of centimeters. It was now bleeding again and stung like crazy. I couldn’t wait to get them out of my house. I sat up most of the day and visited with my parents and kids. It was a good first day home. My husband asked me what I wanted for dinner since I hadn’t really eaten in 4 weeks and I told him I was craving sloppy joes. He said no-way, no red meat yet but finally relented and fixed me a delicious dinner before he tucked me into bed. Saturday morning came and we went on line to check my parents into their Sunday morning flight. It was not working, so I finally called the airline just to find out that the flight was actually for Sat. morning and not Sun. and they had missed it. So off they went to the airport to see what could be done. Unfortunately, to avoid a change fee, they had to leave on Saturday so their time in Vegas with me at home was cut short. I actually spent most of the day out of bed and sitting up downstairs. The bone pain had set in from the neupogen shots so I’m a little loopy from the pain pills every now and again but all in all I’m pretty aware of what’s going on. My cousin Derrick and his family sent me a wonderful package yesterday of a little glass angel that was hand blown by a leukemia survivor in Branson Missouri. It came with a very touching card and it touched my heart more than I can say. Thanks Derrick, Jennifer and Patrick. Today, I’m going to try to get out for a walk with my mask and gloves on. We considered going to church with some friends of ours but it’s just too risky for me to go into public yet. My whites are most likely non-existant. We have an apt. on Tuesday to get blood work and receive more chemo. I’ve been running a low grade fever since I got home so we’ll see what they say about that as well. Sorry it’s a pretty boring update but not much happens when one is in this state. I just take it hour to hour. Thanks for your support. I love hearing from all of you.

What a day. I needed a boom to fly around this room. I was a complete witch. An emotional wreck. Everything is just up in the air. I’m fatigued and slept a lot today. I just couldn’t wrap my mind around things today. It’s day 3 of 4 and I’m hoping to get out of here by day 5 but one of docs says don’t hold my breath. Tomorrow, my oncologist wants me to put on a mask, gloves and gown and go for a real walk. He wants my mind stimulated. Easier said than done but I’ll give it a try. The germs outside the room with my whites at .4 really freak me out. My Mom has been staying with me during the day and going a bit crazy especially with the bad food. Hopefully things will improve over the next couple of days. I’m sure this is not the way she dreamed of spending her vacation. It’s 9 pm and I’m looking forward to a good nights sleep. I think the boys are coming to visit me tomorrow. I hope you all had a great day and I’ll try to write a more upbeat note tomorrow. Love ya all.

So everyone left to go to Ian’s play last night and they started something that made my head feel like something I can’t even explain. Like a fire was started inside. So I called Michael and he came up here to be with me. He was worried as they started some more chemo so he decided to stay for the night. We were watching Willie Wonka and the chocolate factory and I was slipping in and out of sleep around 11 pm.  Well at midnight they started some new stuff and around 12:30 I awoke with the worst pain imaginable in my lower right side. It was like a charlie horse in my kidney. They came in with dilotted (a very strong pain killer) and I expected to feel better immediately. Not to happen. So they planned on rotating the dilotted and the perkoset every hour and a half. Also heat and ice were planned but the dr had to be paged for the heating pad and after he ordered it, the only one on the floor ended up being broken so no heat and ice. But thankfully about an hour later the pain killer kicked in and I was able to get some relief and sleep. This morning they did a sonogram of my heart for a baseline to make sure the chemo isn’t causing too much damage there. The nurses here on the 4th floor have been very good to me and seem to know what they are doing so things are looking up there at least. Now we are just waiting on my Mom to get out of church and come relieve Michael as he didn’t get any sleep last night worrying about me. Bud has a bad headache today so he’ll probably be in bed most of the day. Poor guy is exhausted I’m sure. Anyway day 1 down, only 3 more left. I can do this. Thanks again for all your prayers.

Oh what a couple of days it has been.  Thursday night my oncologist didn’t show up until 10:30 and I was already asleep so he told my nurse to tell me that if I didn’t start chemo by Saturday, I was going to “die”.  What kind of bedside manner is that? He’s more melodramatic than I am. Anyway Michael had to work on Friday so my friend Brenda came to sit with me. I think by the time Michael arrived in the afternoon, she couldn’t get out of here fast enough. She was in shock at everything that happened throughout the day. First, since my iv had been in for 4 days, my nurse took it out with the intention of relocating it. On the same note, my port access was 9 days old and also needed to be changed, so she took it out. I was due for platelets so they wanted to get my port going as soon as possible but my nurse only had 2 years experience and needed to wait until the charge nurse could help her. I had no problem with this as it meant I could move around some without the constraints of the IV pole. Well a couple of hours later they came in to access my port and although I told them it wasn’t in right they assured me it was. They weren’t worried it wasn’t getting any blood return. When they flushed it, I couldn’t taste the saline and I told them once again it wasn’t right. They disagreed and started running some fluids. Well a half an hour later, I’d grown a third boob and I was finally able to convince them that it wasn’t accessed right. Thank goodness it wasn’t chemo or antibiotics that was flowing because it infiltrated the skin and swelled up the whole area. So they tried it again and once again I assured them it wasn’t right and thankfully they believed me. So they called a chemo nurse down from the 4th floor and she tried it without even putting any gloves on. That’s right….I’m neutropenic, accessing a port is a very sterile process and she didn’t even put a pair of gloves on. She thought she had it also and I assured her she didn’t. After messing around with it for a while, she finally resented, took it out and left. Needless to say, I reported her and my thoughts of going to the 4 th floor just became even scarier. Then around 2:30 Brenda gave up on waiting for my lunch and wen to complain. Come to find out it had been sitting out there for a couple of hours and everyone had forgot about bringing it to me.  Then I put a pair of gloves on myself and started to play with my port. It was so swollen that you couldn’t even feel the three dots, so I asked for a heat pad and told them we had to leave it alone for a while. So…….how to get my fluids? Well they decided to start another i.v. but no one felt they could access a vein in my upper arm and they wanted to put it in my hand or wrist. I warned them those veins would blow immediately. They assured me they could get it t work and away they went with the poking. 4 tries later I put my foot down and told them to go find someone who knew how to do an iv in the upper arm. A couple of hours later, they found a gentleman who tried and succeeded. So platelets started and antibiotics on deck, the show was back on the road. So my husband shows up in the middle of the iv fiasco and my oncologist calls at the same time and needless to say, he let his frustrations out on the dr. He asked him if he would eat dinner in a dirty bathroom. The dr. says of course not so Michael asked him how could he expect him to let him give his wife chemo in a filthy environment. He noted that in eight days, my room was cleaned once and it took up to 15 minutes to get assistance and that I was changing my own bed pan. He assured us the 4th floor would be cleaner than the icu because it was also the cardiac unit. We went round and round and finally relented and let them move me and order chemo for today. So this morning, the nurse successfully accessed my port and then they sent me to radiology to also get a picc line. Yes Stephanie…another picc line. At least this time they sedated me a bit and the radiologist was very good at it so it wasn’t the ordeal that it had been in the past. So around 4 pm today, we got started on chemo. Yeah. I can hardly wait for the side effects. Not. None the less, I’ve done it before and I can get thru it again. We’ll figure out a way.My parents arrived this morning and spent much of the day in the room with me. They went to the house to catch a nap and now they are off at Ian’s play. It’s his final performance and he is very excited. He’s playing a leprechaun on stilts in “The history of the Barnum and Bailey circus and how it came to be The greatest show on earth”. He performed last night and called me to tell me it was soooooo awesome and he was very excited. He had a blast and although he was excited to have Grandma and Grandpa here to see him, he was sad that it was over and some of his friends wouldn’t be moving on to the winter program. He was invited by a broadway company that works for shows on the strip to audition with them. They sent me a paper with a personal invitation for him as the auditions are by invitation only. He’s excited and even wants to look into tap dancing as they introduced him to that over the summer as well. Acting for Broadway, fulfilling his scholarship with the talent agency, continuing his guitar, his drums, and now dancing is going to make him one very busy teenager. I like that!!! Should keep him out of trouble. It will also help him get into the Las Vegas Academy of Performing Arts High School. You can’t wipe the smile off his face. I only wish I could be there.Oh…….on another note, the sore on my bum ended up being a bad hemorrhoid. I have a whole new respect for anyone who has suffered from these. Who knew? Yikes, I’d rather give child birth again than have one of these. Perkoset please. And they said I had a high tolerance to pain.Brandon called me today. He is excited about the progress he is making up at the wilderness camp. He is very worried about me but I have assured him I’ll be here when he gets back on the 3rd and we’ll work out his future when he gets here. He just needs to complete his program and keep moving in the right direction. I’m proud of him for hanging in there and making the best of his situation. I can’t believe he’ll be 18 on the 2nd.Austin is having a good time driving his grandparents around. I hope he doesn’t scare them too bad. Just kidding Austin, you’re a good driver. School starts next Monday the 24th and he is counting down the days left of freedom. I asked him if he wanted to move to Houston with me 6 months and I was shocked that he actually considered it. We’ll wait and see what happens.Well  that’s about it for today. We’ll see what tomorrow brings. Thanks for your encouragement, jokes, thoughts and prayers. Your comments bring a smile to my face. Love ya.

Well, it’s Thursday afternoon and I can’t tell you how badly I want out of here. At least out of ICU. I essentially haven’t been out of bed for over a week. I am however spending more time awake which is a good thing. The doctors continue to frustrate me. An ENT was called in and he asked me what the deal was but when I tried to tell him, he cut me off and said he would review my MRI and get back to me. He asked me if it hurt to push on my sinuses. I told him it was sensitive but not excruciating. He told me I’m not that bad then. He ordered some ear drops and a new CT scan for Sunday and never even looked in my ears. I haven’t seen him since. Then last night I started running a fever again. They thought it might be a reaction to the blood I was receiving so they waited a couple hours before the second bag and put it in over 4 hours. So I woke up this morning feeling better but an emotional wreck. I got out a couple good cries and felt a lot better. Then just as I thought things were going better, my urine started coming up red. The infectious disease dr. came in and I told her I thought I had blood in my urine and that I had a sore on my bum. She said that was unfortunate and that I would be on antibiotics for at least another 2 weeks. What? that’s all? 4 hours later I convinced my nurse to call my oncologist about the urine. He tells her to get a sample and to remind me that he wants me to decide by tonight about starting chemo tomorrow. I can’t believe he still thinks I’m strong enough to handle this. He is dead set on it and I’m not sure it’s a good idea. I do not know what to do and I am scared to death of making the wrong decision. Please keep praying and leaving your comments. I enjoy hearing from all of you.

Well I had my MRI this afternoon. It seems my ear drum is healed and it no longer leaks the fluid. Normally this would be good, but it’s causing backup in that ear again so an ENT is going to come look at it and see if I need tubes or lancing of the ear drum to drain. We are still holding out on the chemo. We don’t want to start something unless we know there is a finish line in sight. My sister sent her sample back today so we should know a lot more in 2 weeks. We may be headed to Houston by the end of the month. My parents are flying out this weekend for Ian’s play. He is getting so excited. I imagine I’ll have to watch it via video but that is better than nothing. School starts on the 24th and that is coming up fast. We are hoping to get out of ICU by the end of the week. I welcome any visitors as the days in here can get very long. I hope all of you are having a great week. Please pray for great results from Sheils’s blood. We really need to catch a break here and we really need a perfect match. Thanks Sheila for your help. Love ya!

Well today is my husbands birthday and he’s in here changing my bed pans. There is something so seriously wrong with that. I am still in ICU and have no idea when I may get out. I still can’t hear much. Once they can wean me off of the blood pressure medication, they’ll do an MRI and figure out what may be causing it. They are pouring a lot of antibiotics in me and I started to swell so once a day, they give me a lasik and I spend the next two hours on a bedpan. They have my port accessed but also have an iv in my upper arm. We are arguing with my oncologist now. He wants to start chemo immediately but the other doctors on board as well as myself and Michael both feel that I am too week for that now. I am having a hard time fighting just this let alone zapping my body and taking it down to nothing before we have cured the current problem. I have slept thru most of the past couple of days. I’m hoping if I can show progress throughout the day, I can get moved to a regular room. We would really like to hold off on chemo until we can check out the Cancer Centers of America as an alternative and until we know whether or not Sheila is a match. The wait on that is excruciating. It’s just a waiting game all the way around. We also don’t want to start chemo in this hospital. I’ve learned to change my own bedpan because it can take 10-15 minutes from the time you push the nurse button. And that’s in the ICU. Scary. Of course, unless I go back to Houston, the choices aren’t so good. If I leave, it needs to be for 6 months. Yikes, that is a long time. A lot can happen in that time. I talked to Brandon yesterday. He is due to come home on the 3rd. My goal is to get him shipped out to KS and away from his friends by the 10th of Oct. Vo-tech starts over there in both Aug. and Jan. so he wouldn’t have to spend too much time with idle hands. Well, my eyes are getting heavy. Keep prying that Sheila is a match and thank you again for you comments, thoughts and prayers.

Well we tried as hard as we could to get thru this without visiting a hospital but it just didn’t work out this time. Wednesday my fever spiked up over 102 and just had no strength. I was starting to have a hard time breathing. When we decided to head for the ER, I got downstairs ok, but when I stood at the door for a couple of minutes, I passed out and scared Michael and Ian to death. Michael picked me up carried me to the car and then drove very quickly to the hospital. My blood pressure was extremely low. We felt like we got here in the nick of time.  They checked me into ICU and started a battery of tests and crapload of antibiotics and fluids. I got 3 units of blood and a unit of plasma. My body was itching all over the place and when I would scratch it, I would break out in petecei. My platelets were 3 when I came in. Low end of normal is 147. For some reason they don’t want to give me platelets though. I guess because they are rising on their own. I had sonograms of my legs, a chest x-ray, a CT scan, and several blood tests. My head is feeling no better and I’m beginning to worry because I’m starting to swell and we all know what happened last time we were here. That colitis was painful and I don’t want to deal with it again. I’m in a lot of pain and just waiting for something to give. Keep those prayers and comments coming.

I’m sitting in the waiting room of the ENT doctor hoping to gain some relief today. My eardrum burst a couple nights ago which helped to relieve some of the pressure. More on that later. Right now, I need to ask all of you for more prayers for loved ones of mine. I’m going to start with my sister Sheila’s family. First they found out that her mother-in-law Jean is also battling this ugly disease of cancer. A day or so later, her son Drew arrived home from a trip with his good friend Chris. Drew went to bed but Chris went to town to catch up with friends. A terrible tragedy occurred that night and Chris lost his life in an auto accident on his way home. The town of Ness City is in mourning as Chris was a great part of all their lives and would have been entering his senior year of high school. Lord be with his soul and bring his parents peace. My dear step-father-in-law also suffered a great loss this week. His daughter Dana lost her battle with breast cancer. I know she was close with our Lord and rests in peace now but her husband and children need all your prayers to help them get thru this great loss. My uncle Gary Klaus and our dear family friend Vickie Walschmidt also joined the ranks of those that are battling the big “C”. Please keep them in your prayers as they begin treatment and the fight of their life. Hang in there and stay strong. I am thinking of all of you. We arrived home on Sunday and I settled down in my bed. Ahhh that felt good. Michael started calling doctors first thing Monday. We were having very little luck. We finally got our ENT to accept us on Tuesday but warned us of a long wait when we arrived. It’s a start. Sunday night my ear drum burst and out came a lot of puss and blood. Unfortunately, it was a temporary relief and things are still clogged and hearing is limited. I spent Monday in bed and hope that by Wednesday, I’ll be setting up more and starting to regain some strength. Austin came home but I haven’t seen Ian yet and Brandon is still at camp. I hope to get him written this week.  I don’t know much more but hopefully by the end of the day, I’ll have some good news. Thanks to all of you for your prayers. Keep the comments coming. I love all of them.