Going Home Soon

This has been the hardest thing I have ever done in my life by far. For those of you who know me and have through the years you know I went through some definite trials in life with ex-boyfriends that tested my will power and mentality. But all of that was a piece of cake compared to what I have just been through.

As you can tell I finally have my sight back. I can see just like I could before. No more foggy eyes to go with the foggy brain. So you are all probably curious what has happened since the transplant. I will explain the best I can. To be honest it makes me pretty emotional so I may have to write this in two parts but we will see.

As a funny side note before I begin, The Cowboys Suck!!!! What a crappy way to lose a game and mess up my fantasy football numbers. hehehe.

Okay so transplant day. It didnt start out good at all. My feet were still having that problem of the burning sensation which I am told is a common side effect. So I took a pain pill and it upset my stomach so I ended up throwing up. Great way to start a nervous day huh? So I am already not feeling well when we started the transplant process around 2pm. It started nice. The occupational therapist Kathy came in, put some pressure buttons on my wrists to help with nausea and started giving me a foot massage. Then my nurse gave me some Benadryl. Well that made me a little loopy and a little relaxed. So I am thinking, hmmm maybe I will just sleep through it all. No such luck. I got some anti-nausea meds and the 6 bags of stem cells arrived. They thawed them in the sink and we began the process of transplant. They took one bag, put it in a giant syringe and slowly injected it through the same IV line as my saline drip. So she was about 3/4 of the way of getting the first bag into me when I felt heat from about the bottom of my breast bone to my stomach. I knew that wasnt good. So I was just and puking like a pro. I was so hoping I wouldnt throw up. So I finished and they got me some ativan (not sure if that is the right spelling or not) and it helped me relax a little more. Its used for anxiety and nausea. So I got through the second bag just fine but was sick again by the third bag. Lets just say I had 6 bags and 3 puking fests. So we finished and I passed out. Thankfully mom and dad were here with me.

So I pretty much slept until the next day. The following day I was awake for a bit but my stomach started hurting something fierce. I had this hard shooting pain right in the middle. It just wouldnt go away. I remember calling Kevin that early morning when my parents were at breakfast I guess and telling him I loved him. I felt so bad and just started balling. I needed his help right then and he definitely did. I felt a little better until my nurse came in. She asked what was wrong and I just started balling saying I just felt horrible. She was nice and took the time to calm me down. So I was awake some that day. But the eating problems began then because of my stomach.

When everything happened to this point is somewhat of a blur. I started not being able to keep food down, take my pills and keep them down and that is a problem. So I seemed to start on a regimen of nocor (a lovely pain killer) and ativan. I was also put on an IV diet. I pretty much slept for the next week. If I was awake I had my eyes closed a lot. I tried to get up but my stomach hurt so bad it make my life miserable. It seemed the doctor's didnt do anything to help it enough. But I started on a stomach cramp medicine and eventually I started to feel better. I dont remember much that went on. I probably worried my parents to death. But eventually I started to come out of it I guess on Thursday. I was still turning away food though.

The best part was that on Friday my counts started turning around. I was finally starting to be positive. I think I started the Nupogen shots that day or Thursday, cant remember exactly. They boost your body to create white blood cells. They also make you hurt, well your bones hurt since it stimulates the marrow. But they did their job. I had a pain pill and then got sick again. Pain pills just dont seem to agree with me I have determined. If I didnt take it with ativan I was screwed. So I ate on Friday little bits, the biggest part being a McDonalds cheeseburger that Kevin brought me. Well actually that may have been Thursday. Who knows. But by Friday they were telling me I was possibly going home on Monday. Now that made me so happy. But it also stressed me out. I was still on the liquid IV diet so if I didnt eat its not as big of a deal but if I wanted to go home I needed to be able to eat right?

So Saturday comes and I am feeling good. I had very little of my breakfast but that is okay. Danielle came up to see me and that made me super happy. I dont get to see my best friend much so it was great she came to see me in the hospital. She stayed most of the day and my parents were here too. Lunch time came and boy I felt so pressured to eat. I was afraid it will hurt my stomach again or it wouldnt stay down and I wouldnt be able to go home. I just want to go home really. I miss my cats and am tired of these 4 hospital room walls. So I got upset about even trying to eat lunch. I felt bad getting upset in front of Danielle and making her cry too but my dad was there and he helped me realize that its not a big deal. I just get through one meal at a time, I bit at a time. So I had some corn and that was about all I could have on that plate. Thankfully I remembered they probably have chicken noodle soup here on demand so mom got me some of that and I ate it through the rest of the afternoon.

So since then I am trying to eat little bits through out the day. My stomach has shrunk to a very small size after not eating for a week. I am only about 5 pounds lighter because of the supplemental IV stuff but I have a feeling that I will probably lose a few more because of my eating habits. Mom and I have been thinking of things to get me motivated to eat. I say smoothies. We just have to add some protein to them so they make are more than just fruit. I am worried about it still. It stresses me because I dont want to get sick and come back here. I want to go home, be healthy and live my life again. I want to stay on track and be able to go back to work and be "normal" whatever that is.

But I am supposed to be sprung from Baylor tomorrow. Yippee. I have a lot of time that I need to make up with Kevin and my cats. I keep hearing how much my kitties miss me so they better be happy to see me. But I will be coming back for check ups 2-3 times a week for 2-3 weeks. I have to make sure I wont get sick or have my counts go down. I have been told I will have to have blood and platelet transfusions, most everyone does but that is okay. I can come do that here and still get to go home afterward.

This has been an emotionally and physically draining part of my life. I hope to move on from here and get better. And I hope they find a cure for lymphoma in a pill one day soon. The first time going through chemo and radiation isnt so bad but I wouldnt want anyone to have to go through feeling like it would be better to die than be as sick as I was. And I have been told I did really good. Imagine what people much older than me go through. I didnt ask a lot of questions but someone almost flat lined today who was much older. He is now in ICU. He may have also had a donor other than himself but still. This better be my cure for sure. I have had enough for my lifetime. Once we are able to get Kevin's other hip done someday I dont ever want to be in a hospital again.

Well I think its about time to go to bed here soon. Big day tomorrow. I get to go home so they say. After 19-20 days here I think I am ready. I just want to sleep in my own bed, watch my tv with the good cable, and spend time with Kevin and the folks. I want to thank everyone for your words of support. Even when I couldnt write back just know that it all helped.

love,
Roxanne

will post late

hi everyone. I am alive and well. My vision is just the most blurred thing ever so I cant write, surf the web or much. I will wirte when and catch everoyone up once this goes way. They have no idea. But today is +9 so cant be too much more right.

love, Roxanne

Zero Day

Good morning everyone. Its that day finally, transplant day. I wont lie and say I am not a little scared, nervous, and anxious. It started to hit yesterday. But let me go back to when I last wrote.

Monday started out as a good day. But I started having pains in the bottom of my feet, sharp burning pains whenever I would walk on the tile floor here. Socks helped a little but my feet get so hot when I have to wear socks. So after my shower it was too much so I told the nurse. She contacted the doctor and got me something for it. So I got some type of liquid medication and ended up feeling worse in other ways. Thankfully Kevin was with me when I didn't feel good. I just had really blurry vision, my head was heavy, and I just wanted to roll over and sleep. Only problem was I couldn't get to sleep. They said that all happens with that med. Thankfully it did take the pain from my feet but I definitely didn't like the side effects from the other drug just as much.

So I woke up yesterday and my feet were feeling fine. Yippee, something good for my day off right? Well they started again late last night so I am going to have to deal with that today. They said I could just have pain meds instead if it came back and I think I will take them up on that. But we will see because I don't want it to make me sick for transplant you know?

But anyway Kevin was here on Monday and that was really nice. I got McDonald's for dinner and he ate my healthy meal. It was a nice trade for both of us. We played games and just spent nice time together. Maria came to see me yesterday day and brought comfort food as well. The company was wonderful and she thinks she talked my ear off but not in the least. I loved having the conversations.

So today I am tired (it is still early though huh) and am just waiting on food and to find out what time all this fun stuff begins today. I figure a shower after breakfast and I should be good. My parents should be here today. They were planning on leaving Houston sometime this morning between 4-5am to get here in time. I will be grateful they are here as we don't know how much I will bottom out and need the additional help for sure. Two more weeks in here and I will be sprung. I'm jealous of the cooler mornings I keep seeing on the news. I love cooler weather. So hopefully it stays when I get out of here.

Well I think I need something to drink so its up to the mini fridge with me. Hope everyone is doing wonderful. Thank you for all the emails and support. And I have loved the cards and drawings as well. I will see everyone as soon as they allow it.

love,
Roxanne

Day -2

Another two days closer to day zero. I am doing pretty good. Well much better since Kevin has been here since last night. He stayed the night again and made my evening and day today. He brought some games and the Wii so today we have been Mario Carting and Mario Partying. Makes the time pass bye and keep my spirits up.

I finished my chemo today as well. I got my last type of chemo called Melphalan. It only took a half an hour. I am still on lots of fluids to help flush my kidneys which is a good thing. I might need those later in life right?

Tomorrow is a rest day. Maria from the Leukemia and Lymphoma society Team in Training is coming up to see me and bringing me lunch. For that I am most appreciative. Kevin brought me Taco Bell last night and it was heaven. For anyone who has been stuck in the hospital for several days know how much outside food can make life so much better. I cant imagine women who are on bed rest from pregnancy for a couple of months at a time. They have to go absolutely crazy. I know I have been here for only 6 days and its making me a little stir crazy. And I still have just over two weeks at least to go.

But I be going home soon enough right? I am looking forward to transplant day. They give lots of regular meds and do holistics as well. I will get a food massage and these wrist bands that have little buttons on the underside to help with nausea. I like the whole approach to everything. Make everything more relaxing and not stressful. Makes life good.

Hope everyone is doing good. Talk to everyone soon I hope.

love,

Roxanne


Blood Counts:
WBC: 10.3
HCT: 31.8
PLT: 163
TP: 99
ANC: 10,197

Day -4

Here I am still in the hospital. Only 18 days to go at least if I add correctly. By that seems like forever doesnt it? Stuck in your room at a hospital, door closed all the time. We have to keep the door closed to keep the hepa filter going at its maximum rate. I can leave my room of course but I cant leave the floor. Its a liabitlity to do so. I may just have to take the time to go outside tomorrow anyway. I am getting a little stir crazy.

Friday was an okay day. Not too much happened. I continued my cross stitch, got a nice visit from a volunteer named Katherine who is part of the DFW Metro TNT team. She was so sweet and I really enjoyed her company. I am looking forward to seeing Maria on Tuesday if she is feeling better as well. Other than that I read some, listened to some music and watched the Presidental Debate. Very interesting how they reacted to each other for sure.

Kevin was able to come up last night once he got off work. I was so happy to see him for sure. I am so used to being around him whenever we are not working and all that. I miss my kitties too but they will just have to wait. But having Kevin stay here last night and be here till 12:30pm today just made my life that much happier. It gets lonely here.

But I am starting to get more tired each day. I am still getting the same two chemo's from Day -6. I think I will get one more dose of each tomorrow then I switch one final type of drug on Monday. I am losing my appetite as well. I have only about 1/2 my usual appetite. But I am not complaining too much about that. With all the fluids that they are pumping into me I am retaining like crazy. I was put on a diaretic yesterday because of the retention. Joy I know, maybe even a little TMI but that is what you get from me here.

Emotionally I am doing okay most of the time. I do get lonely around here which does get me down some. So anyone who wants to shoot me some emails about how their lives are doing that would just cheer me up I know it. If I have too much time to sit and think then I start to get down. I spent most of my day doing cross stitch of course and watching Harry Potter. Well actually I listened to Harry Potter mostly because of the cross stitch. It kept me busy and I just have to do the outline on the piece I am working on now and it will be done. Yippee. Then its onto cross stitch Christmas Ornaments for family.

Well thats about all from me for now. I miss everyone and cant wait to get back to normal things in life, such as work, going to TNT, seeing family and friends. Thanks everyone for the support and love.

Roxanne

Day -6

Well here I am again in the hospital. I have been keeping myself busy here. Today I have done a lot of cross stitch, working on a piece for Kevin's Aunt. She was very helpful to us this year helping us move and coming when Kevin was in the hospital. She has gone through her own family crisis of cancer this year with her mother but found out good news this year when her cancer had not come back like they thought.

I also learned a type of meshing of knitting and crocheting. It is done on a round loom and makes the cutest winter caps. I made one today on a baby size loom so I have a cute dark purple hat for the top fin of my killer whale until someone I know has a baby. I think it will be easy to make scarves with it as well if I get that real think yard that is all whispy. It could be really cute.

I also listened to music and watched some episodes of Bones from the first season. I am trying to stay busy and make the time pass. Kevin was able to come up and see me last night which made me smile big bunches. He works a lot the rest of this week but seems to have Monday off so hopefully he will be up to watch Monday night football with me and play some card games.

Today I had two types of chemo today. First I had Cytarabine and Etoposide. I have had Etoposide before with the ICE I got but it never really caused any problems. So far I am doing great. Just trying to make the time pass bye. I am not really tired even though I am still waking up about every two hours. But I seem to fall back asleep really quick so I am not exhausted. I just get a little tired earlier than normal. No big deal there.

I got to talk to all of my family pretty much today. It was nice. I talked to my sister and my mother. They are having a great time. My eldest nephew yesterday told me he wasnt happy they were only staying there a week and wanted them to move in forever. So sweet he is at almost 9. Next month is his birthday along with his sister who turns 1. And for those of you who have seen pictures of little Delyla know how precious she is. Then I got to talk to my brother for a while and find out how he is doing. That was nice, even with his youngest screaming in his ear and mine, something about being afraid of geese flying around. Ah two year olds.

Well that is about all that is going one so far. I am definitiely glad that I am not having any problems. It makes this process so much easier to deal with. The time just needs to fly by and all will be awesome. Hope to see everyone as soon as I can. Love yall.

Roxanne

Blood Counts:
WBC: 14.6 (yesterdays 6900 was actually 6.9)
HCT: 33.6
PLT: 221
TP: 95
ANC: 12870

Day -7

Good morning everyone. Well I am here at Baylor Medical of Dallas in the lovely Collins Building, Floor 4, Room 428. I am a lucky girl in that I got the biggest room here in the bone marrow/stem cell transplant ward. It will come in handy next week when my parents are in town and of course Kevin visits too. For now I am going it alone during the days and Kevin is visiting when he can. The chemo that I start today at 10am is not supposed to be too bad. I may be a bit tired but that is about it till transplant.

So I was admitted yesterday after I had my central line put in. As you can see from the picture it is in my neck this time and has three connectors sticking out from it. That way one line gives me fluids, one line is to draw blood and one line is to give chemo. It keeps it all nice and sterile and seperate. They can have all those things going in at once instead of one at a time which is what happened when I had just the one line in my arm. That got pulled out on Monday. Didnt even feel it. Now I felt the central line go in but the worst part was actually getting the numbing meds so they could cut into me and stitch me up. Crazy I know.

But anyway today I am getting chemo drug BCNU. It is supposed to be housed in alcohol so I maybe drunk by the end of it. Should be fun to be buzzed in a hospital right? And for those who dont know today is day negative 7. The way they date you around here is the first day you have chemo you start out negative. I have 6 days of chemo, one day of rest, and then on day zero I get transplanted. So after the transplant the days will turn positive. Makes sense I guess. Its good to be positive.

So after I got my room Kevin and I moved me in. We decorated the windows and I will include that picture tomorrow. The window clings are so cute. Kevin put up all the pictures of my nephews and my niece as well as the picture of us. Its on the mini fridge right at the end of my bed so I just look ahead and see us and smile. I know it will help get me through all this that much easier. Right now I am just waiting on breakfast. Amazing how hungry I am after so little sleep. I woke up every two hours to either go to the bathroom (they pump me full of fluids until transplant) or to have my blood taken or to have my fluids changed, or get meds. But thankfully I was able to fall back to sleep easily.

Well breakfast is here. Talk to everyone tomorrow. I hope you all are doing good. Feel free to email me at ramahan2000@yahoo.com if you are bored.

love,

Roxanne

PS: I will be posting my blood work numbers for me to keep record of them.

WBC: 6900

HCT: 33.4

PLT: 185

TP: 80

ANC: 5520

Delay after delay

Well its been a while since I have updated this site. I have been busy for sure. After my second bout of ICE chemo I spent a lot of time at the hospital. It seemed that every time I went back to have my blood work checked I had to have something done. The first time I had to have a blood transfusion, 2 units. Then I went back 4 days later and had to have a platelet transfusion. According to their factors if your platelets dip to 15 or below you get to be transfused. Well mine were 15. That was on a Friday. Well Kevin and I went back on that following Monday expecting things to be better and not spend much time there but my platelets had dipped even further, down to a 12. Crazy huh? I went back a week later and they were finally good, at 277 and the I got the best news of all. I had had a PET scan earlier that morning and it came back clear which means I am officially in remission. Yippee.

That was a little over a week ago. I thought I would be in the hospital starting last Thursday to begin the BEAM chemo, and then transplant. But as some of you may know, nothing is that easy when it comes to insurance companies. I found out last Tuesday that a lot more has to be done first. A letter and my medical records had to be sent to the case manager for Cigna to determine that it is medically necessary for me to have the transplant. Then after that is approved I will have to go through a battery of tests. My oncology coordinator said it should only take a week to get approved and then two days to do all the tests which include an EKG, pulmonary function test, kidney function test, bone marrow biopsy (my least favorite) and some kind of additional body scan.

So I gave everyone a week right? So I call my Cigna case manager this morning and she says she hasnt gotten any of the paperwork yet. And she informs me that there is no way that the tests could all be done in two days. I said what kind of other tests are needed? One was a clean check from my dentist. Thank goodness I went to the dentist last week because a tooth was bothering me. I had a cavity and got if fixed the same day. And she said other tests but didnt specify. So after that I got off the phone and called my onc coordinator. She said the insurance coordinator in their office sent all the paperwork last week. So between these three people they were supposed to be faxing each other to get all approved. Thankfully I got a call after the lunching hour and am approved to do all the tests and my doctor knows what tests I am supposed to do now. So hopefully they will get this all scheduled this week so that all can be done by next week.

I would like to be in the hospital by the 15th but who knows if that is what will happen. I really just want to be home for Halloween and have the strength to have a happy Thanksgiving and Christmas. That is my main goal really. Kevin and I have been buying decorations to make our screened in porch really spooky for halloween. It helps that he works at Michael's right now so I can buy stuff on discount. The coolest thing we have gotten so far are these window clings that are gelly like. They are bloody hand prints. They are so cool.

My sister is on her way up here tomorrow night to stay with me for a few days. I am so excited. She was planning to come stay with me because I was going to be doing my transplant on Friday. But even though I am not going to the hospital she so deserves a break. All you mothers out there know how hard it can be to find time for yourself. She hasn't had time away from all the kids since before she was pregnant with Dalton who is three now. So she is very deserving of this vacation she is getting. We are going to Sam Moon, The Pocket Sandwich Theatre with Kevin, and who knows what else. We will be watching movies and all sorts of stuff. Kevin unfortunately will be working most of the time, except Friday so its girl time.

I hope everyone is doing great and had a wonderful Labor Day. Don't labor too hard now that the work week has started again. I am trying to clean my apartment in slow batches. Everything can be done as long as I do it in batches so I don't exhaust myself. Take care everyone and I love you all.

Olympic Glory

Well this has been a hard week. Three days of chemo, a Nuelast shot on Friday, and recovery. The recovery this time has been a little harder. I have been so tired. For most of you who know me very well you know I am not one to stay down long. But I did finish the 6th Harry Potter book in record time. Just one more book of that to go, have to wait on paperback though. I hate hardback books. But that is okay, I can wait. This was the first one that I have read before the movie was out.

So I have been having problems with energy and my stomach a little. Heartburn is a killer. Amazing how in my life, before cancer, I had only had heartburn once. Now it can come without any thoughts, mostly since the radiation. Scary that the radiation got rid of the spot in my neck that popped up toward the end of chemo but now I have problems with drainage and heartburn.

I have also had breathing problems today pretty good. Kevin and I got out today, taking stuff to the post office, having lunch at Wendy's and going to one of his favorite scavenger hunt places for records, GOOD WILL. We found a Paul McCartney album and since Barbara and Sid speak so highly of Allison Krause he pick up a cd of her's as well. He loves finding new music and getting recommendations from people. So if you got a great suggestion let us know! But anyway by the end of these short excursions (I sat down the whole time at good will) I was exhausted and couldnt breath well. So I have been having little crackles in my lung again the last two days and now shortness of breath.

I still did the dishes tonight though, go figure. I am a gluten for punishment I guess. But that is okay, I feel better mentally doing that so that is why I do it. I have had so much support from so many people the last few days that I felt I needed to get my butt up and do something. I want to thank everyone who has brought me food, ordered me food, and prepared me food. Kevin and I have been overwhelmed by the generosity. It has been great and transferred over to lunches as well. Thanks to Sandy and D'anah from work for the food. It was delicious. Thanks from Kathy, Christie, Patty, and the Itailian food gooddess (I didnt get your name). And thanks to Caron and Maria for getting it all organized. It has been a life saver.

Kevin and I have also been Olympic freaks, watching it most of the day, all day. Never seen some of the sports, like archery. Pretty cool. Make sure everyone checks it out. It needs our support.

So tomorrow I head to my oncologist and get my blood checked. I hope to get an update on the dates I will be having my next pet scan, transplant orientation, and when BEAM will be and then of course transplant. I will keep everyone updated as I continue my journey down at Baylor of Dallas. Love to everyone.

Roxanne

Start of Something Special

Welcome everyone to my blog. I hope to be able to keep this up and let everyone know how I am doing and where I am at with my chemotherapy and stem cell transplant. This will be a pretty open and honest blog through my journey. I look forward to hearing from anyone and everyone.

I am currently on my second round of ICE chemotherapy. I had 1 hour of chemo last night with one drug. Tonight I will get all three drugs. Its the hard night for me because it last so long. So much chemicals going through my body as well as saline. I will be up way to much going to the bathroom for sure. The side effects mostly are extreme exhaustion, some nausea, and hair loss as you will see below if you missed me at work on Friday. Other than that it hasn't been too bad yet. The next round will be a chemotherapy package called BEAM. That will be the bad set. It will eliminate my entire immune system. From the research I have done I will get pretty sick. But if it will help to keep it from coming back again I am all for it.

As you see I have lost my hair. It started falling out only two weeks after chemo. I have lost about 75% of it and Kevin shaved off the rest on Thursday. Thank goodness for him. We went to the circus on Thursday night and had a great time. I have to enjoy these few moments I get while I can. My best friend Danielle came up to see me on Saturday from Houston and that was such a treat. We don't get to see each other as much as we would like so I treasure every time I get to see her. And my sister will be coming to stay with me during transplant while my parents go on a cruise to Alaska to celebrate their 40th wedding anniversary. I am looking forward to getting to spend some time with her even if it is when I wont be feeling well. And my friends Chris and Peter sent me a beautiful scarf from to cover my head with. They live in Vegas and I am jealous of that. Chris and I have known each other since 1993 at college(we shared a dorm room our Sophomore year) and she is the reason that I first met Kevin and was reunited with him.

Well I hope everyone is doing well. If you think I didn't send this blog to someone that would love to see it just forward it on and let me know whom to add to my distribution list. I love the feedback and support from anyone and everyone. Take care all and I miss you.