Lovely Lupie

Long time no post

2011-07-02T22:48:00.002-05:00

Hello blogger world,
This is July 2, 2011, 7 months have passed...... I can't believe it, its all surreal still. There has been so much change go on and so much that Sandy wanted to see and be a part of. I know she is still a part of it, always watching over us and knowing what is going on. I just wish the physical presence was there as well.

Every day it seems as if someone asks "how are you doing?". I go with the generic everything is going ok or good. Which I believe they are as good as they can be for what we are dealing with. The kids and I have our health, a roof over our heads, and food to eat. I can't say as things are going great, because to be great would be to have our family of four still and none of this debt that I am avoiding. I don't see how getting into all of that with someone that asks how things are going would accomplish much and I don't want people to feel pitty for us. There are people out there that have it much worse than us.

Its also hard when people ask the kids where their mommy is or they ask me where she is. There is always and awkward pause then I explain to them about the situation. Then there is another pause and an oh, I am sorry. Then usually we go about our separate ways. It does, but doesn't bother me. I don't mind talking about Sandy in fact it helps me, but when the kids are around and they look at me with their big eyes I can see how much it hurts them. I talk to them and they talk about Sandy and we always have good memories to share. There is a lot of things that would be easier with Sandy still here to help out, but we are making our ways and starting new things and it is a learning process. People also say that they couldn't imagine doing what I do on a daily basis. I think anyone in my situation would be just as capable if not more capable than me on doing the things I do. There is a lot I need to work on, but again it is a learning process day by day.

Well I just wanted to give a little update on how things are going. They are going ok and we are doing fine. We still have an amazing support system. Thank you for everyone involved.

Still Blogging On

2011-02-11T20:42:00.002-06:00

Dearest Sandy,
Hey baby, I know you are still and always will be looking on us from Heaven and I feel your presences daily. I still wait to tell you things daily and wish you were here to really be able to tell them too. The past week and a half have been difficult with Payton running a fever and it even getting up to 104.5 a couple of times. He would always cuddle with you before and you would know exactly what to do. I just did what I thought you would do and finally he has been fever free for two days now! He has gotten his full appetite back and is the same big man. Grace is doing well. We just went to a birthday party for one of her classmates today and she got to play laser tag. It looked like a lot of fun. The parents of kids in her class are very nice and supportive. I am amazed still at the amount of support and assistance we have received from everyone that knows us and even those that do not. I am going to probably get involved in some sort of cancer walk, hopefully melanoma this year. I want to teach the kids how to help others even more. I know how important it was to you, even doing things for the lupus walk when you were very ill. I love you and think about you all the time. Most of the time the days go by well and I think of all the memories we got to share with each other and the hopes and dreams that we wanted to do in the future and still want to pursue our dreams. I love you sweet sweet Sandy. You were, are, and always will be an amazing inspiration and I hear it from other people on a daily basis as well.

Love always,

Andrew

PS: Donations made to the Pinnacle Sandy Towle Fund and to the Paypal link on this blog are being transferred into accounts for each of the kids for a college fund. I do not want them to go through debt and hardships like I, and a lot of other people have had to go through.

testing this out

2011-01-23T18:01:00.002-06:00

Dear Sandy,
We still and always will miss you tons. Not a moment goes by that I do not think about you or wishing I could share the moment with you. Grace and Payton are growing so much, not only size wise but in every way. I see you in them every time I look at them. We push on through each day and they bring you up occasionally. I cannot imagine what it is like to be them and to lose their mommy. You were their lives through everything. I was gone for the Army for almost six months and it was you that was there for them. I went through the police academy for 10 weeks and it was you that was there for them. There is so much that you have done and it shows with how bright both of them are and how well they get along with each other. I try to think of how you would do things with them and do it that way. I know I could never be as good with them as you were. We read every day even if just for a little bit. Grace has already read the first two Diary of a Wimpy Kid books and is almost done with the third. You had so much patience with them through every thing and I have definelty gotten better with that. Payton is getting signed up for t-ball this year and Grace is going to play as well. They are both excited. I am also going to get Grace back in gymnastics. She talks about it all the time. I love you sweet sweet Sandy and would give anything for you to be back with us.

Love always,

Andrew

ps. this blog was shut down for a little while by google because they said they detected suspicious activity. I don't know if that means someone has hacked it or what, but it should be taken care of now.

its been awhile

2011-01-10T23:52:00.003-06:00

Dearest Sandy,
I know it has been awhile since I have written to you via your blog or facebook. It gets hard to express my feelings and share things on here. I pray for you and hear you respond and feel your presence everywhere and in everything I and the kids do. There has been a lot going on and I have been trying to keep us busy and our minds going. I ask daily Why? Why you? Why us? Why like this? Why so soon? Just WHY?
Since I have last written, Grace, Payton and I made the trek to Iowa over our Christmas Holiday to spend it with my family. Before we left we celebrated with your family down here in TN. This was a very difficult time to go through knowing how much you loved Christmas and enjoyed spending the time with family. We had several friends and family members pitch in and make this Christmas extra special for G and P. They received so many gifts it was incredible to watch them open and keep celebrating. We even had more gifts for the kids and me when we returned to TN waiting in our dining room. It was an amazing surprise and Santa even left his hat on the tree and another had in the living room. The daily grind is just not the same without you babygirl. We get up and get ready for the day and I always reach to your side of the bed in an attempt to get you up with me as well so we can enjoy the activities ahead. Grace has been reading The Diary of a Wimpy kid books and finished the first one in about a week. It reminded me of you and your speed reading going through a series of books in about a week. After she did that we went to the book store and I got her the next two in order so she could work on them. Payton has been playing with his cars and trains a lot and we have been having a lot of fun. Today was my first day back at work. You would love my schedule now sweetie. I got a position at the courthouse and rotate weeks either 0700-1530 or 0800-1630 and I get weekends and Holidays off. Its like being on a normal schedule for a change. I wish my time off was spent with you. I go through pictures on the phone and on the computer on a daily basis just to see your smiling face. You brought so much joy to so many people and still continue to with your story. It snowed a lot last night and the kids got to play in it with your mom and Mr. Lamb today. I still do not quite get how to cope with not having you around. It is a daily struggle especially doing things that you loved to do, but haven't been able to in a long time. I cuddle with the kids a little more now and have so much more patience with them, I'm still working on more, but you taught me so much with our wonderful children. You were the most amazing mother and wife that we could have ever asked for. I was just thinking of our dreams of owning a little white farm house with a few acres and growing old together in it and having our grandkids come visit and we could sit in our rocking chairs on the porch watching them run around. We had so much planned for our future that it should have never been cut so short. Why after all the doctors that we went to over the last five years could they not have found the cancer any sooner than they did with all the blood work and tests you have been through. There should have been some way they could have caught it before it was stage 4. Stage 1 and 2 are easily treatable in most cases. I do not know anyone that has been to the doctor more than you over the past several years. I get so angry and frustrated. Baby I want you to know that I LOVE YOU and ALWAYS will. You kept saying that something did not feel right, but it was always blamed on the lupus. I sure hope you are resting in peace now, you went through enough for anyone in several lifetimes baby. I should probably get a little sleep now since I have to be up early for work.

Love always,
Andrew

letters to Sandy

2010-12-12T21:40:00.003-06:00

Sandy,
I find it somewhat easier writing to you often as opposed to just talking about you. I know you can read these and know what is going on with us, but I like to put it out there for you as well. Grace has been reading more on the book that we held back on until something like this happened. The only question she has written in it is ?How do people get cancer?" I've told her different ways it possibly happens but there is too many ways to cover them all and I don't want her to feel afraid she may get it just by going outside or however, and I think she has a really good head on her shoulders thanks to your awesome mothering skills you had and the things you taught her. Payton is still pretty quiet about it all and very attatched to me. He still brings up that "at least Mommy is not in pain anymore" pretty often. I know how much you hated cemetaries and going to visit graves and you never would, but I am going to visit you very soon. I haven't been able to yet. The kids and I are going to Iowa to spend the holidays with all of my family and are leaving on this Friday. We will be gone a couple of weeks and then come back home again. From what I hear the kids are well taken care of for Christmas gifts this year, I know you would love to see their faces when they open something new and absolutely love it. Today in church Pastor Spence was talking about reaping what you sow and not only meaning money. I can definetly see you sowed some strong seeds down here for us. All of your friends and family and anyone that crossed pathes with you was touched and they are returning it on us tenfold. I'm looking at getting a new/program vehicle for me and the kids. I'm very torn on what to get. I really want a smaller SUV with a few options and things, but they seem just a little steep. I have driven a Ford Focus and it was too small. I want good gas mileage, but also room to grow. Whatever i end up getting I want to keep for the life of the vehicle and want it reliable for us to be able to travel in. A hybrid would be awesome, but they are even more. I am paying in cash so I don't burden myself with more payments. I know once I get in something that feels right you will let me know. The escape we had before we had Payton was nice so that is an option again. Your koala that clips to the visor in every vehicle we have driven is in the buick right now and I pointed it out to the kids that you were riding with us and watching out for us. They thought that was cool. Well I feel pretty drained now so I am going to let you go. I love you very much sweet lady.

Love always,
Andrew

p.s. we got a tennessee snow and they cancelled school for Grace tomorrow, so we are going to pick up around the house and play games.

Birthday

2010-12-05T22:46:00.002-06:00

Dearest Sweet Sandy,
I am lost without you here. Everything has changed. My world has stopped, but I see other people still going. I wonder how/why. I continue to get flooded with the amazing support system you have put in place for me and the children. It is all very overwhelming, but much needed. I think in a round about way you set it all up on purpose so we would not be totally alone, I believe that you tried to prepare us for you to be in Heaven and not in pain any more. I thank you for all you have done. I have grown just by knowing you and being in your presence over the past seven years. I cannot believe I only got to be with you for seven years, I feel cheated out of great times. The dreams we had of growing old and sitting outside watching our grandchildren. Things happen every day and I see you there with us, I hear your voice. You are with us I know it. I have all the subtle reminders every day. Today 12-6 is your birthday. You always loved your birthday time/ week/month everything about it. I never got the chance to do much for you or wow you like I always wanted to. I really thought this was going to be the year. I still think the children are going to have the amazing Christmas you wanted them to have thanks to the support system you have put in place for us. I know you are in Heaven and celebrating your awesome life with family and friends that have made it there with you. I just feel numb baby. Payton got sick tonight and said he had a headache, so I gave him some tylenol and he wanted me to law down with him. He fell asleep shortly after we laid down it was precious. Later on he said his head still hurt and he went to the restroom and got sick with a fever and all. It was a time I really needed you. He needed you. You always had a way of comforting both of our children that I can never replace and I could see the hurt in his eyes that you were not here. He is such a strong little boy and I felt the love that you have put on him while I was cuddling with him. He has been resting since I got him to fall asleep again so you do not have to worry. I know you will help us through these times from above. Grace has troubles every day and night and screams out for her mama. She misses you more than anything she wants to feel you again. People say that time heals all. Time......... I do not know how much time........We will continue to fight and persevere through the good times and the bad just like we did with you here. Things always seemed to find a way to work out for us one way or another. I'm going to get some help with our finances so I can get out of this debt and not make the same decision that we did in the past baby. I want the kids to not have to hear me talk about it any more and have good lives. We still have your benefit account and your parents also set up an account for our sweet children for their education. We are well looked after and have you as a precious precious angel looking out as well. Thank you for everything you have done and will continue to do for us. Your service to celebrate your life was beautiful. The songs, the eulogy, the message, the precession, I could not have asked for it to be any better. I LOVE YOU and ALWAYS WILL. I will continue to exclaim this. I have not made a decision yet whether to keep posting on your blog, or to branch off and do one of my own and try to keep your message going of positivity through anything life throws at us or stop it all together. Only time will tell what I can handle. Today is going to be very difficult, but I do not want you to worry. I want you to celebrate your life and your birthday with the angels just like you would with us. I want to wish you a happy birthday babygirl.

Yours always,
Andrew

(sorry if it does not make sense or there are errors, i cannot reread what i wrote and edit it at this time but wanted to go ahead and publish for Sandy to see)

the sinking feeling

2010-11-28T07:34:00.002-06:00

Hello as you guessed this is Andy doing another update. There is a lot of people out there praying and thinking of us and it is definatly felt and appreciated. Our support system is amazing from friends, family, strangers, nurses, web people.

Now on to what you are wanting to know about.

Sandy is in the hospital at MTMC in room 545. The doctor has pulled us aside and said things are really not good. Said the progression of the cancer at this point is irreversible and it has all happened so fast. Its not an exact science on how quickly things happen and it happens differently on every person so I don't want to think about or give a time frame, he just said things won't go on like this for long. I have made the decision with the medical professionals not to take her to ICU where she would be closed off from friends and family from visiting except one at a time for 15 minutes at different intervals throughout the day. Sandy is still so positive when she has her moments of clarity, yet most of the time its very disheartening to try to interpret what she wants/needs/ or just wants to communicate through to us. Our nights consists of sleeping with the bed alarm on so when she needs to get up and use the restroom I get up quickly with her and help her in and out. We had a couple nights that were very rough in this aspect and I didn't get much sleep at all. Last night I had the nurse give her, her ativan for anxiety about 8:30 or so in order for Sandy to rest then again around 1 after she got up to use the restroom. This seemed to help the night a lot for her and for me in getting more rest. Right now the plan is to keep her as comfortable as possible. This is the hardest blog I've written to date because there is so much I want to say, but my head is racing and I don't know what to say and write out and what would be too much information. Things right now are just not good and emotions are at an all time high. Thank you all for the thoughts and prayers and the visitors that come by and phone calls, emails, texts messages. It is all greatly appreciated and helps.

The kids are doing good and have good visits with their mommy in the hospital. They draw pictures and bring up and hang in Sandy's room. Grace gets to talk to a special friend at school that her mom battled cancer and won and it really helps her out. She also has an amazing support system at her school with her teacher and counselor both are amazing women and I have talked to them several times. I think I'm going to stay the night at home tonight so I can take Grace to school and go in and speak with her teacher and counselor and give them an update of what is going on. Payton gets to spend a lot of time with us and other family that is in town visiting. My sister and her husband brought up their five and a half week old baby to get to see Sandy and they kept the kids for us when they were here and Sandy's parents have been sharing watching them. My parents just drove down from Iowa yesterday and are helping out tremendously as well staying with the kids and getting to visit here. If anyone wants to contact me, I get the e-mails from the comments left on the blog or you can e-mail me directly at abtowle@gmail.com. If you have my number you can call or text it or get a hold of me however you can. I also keep Sandy's phone on me now because I don't think it would be a good idea for her to have it in her state of mind, but if she wants to call someone we help her and put it on speaker.

I know a lot of people that read this blog may be going through situations like this or have in the past, you can e=mail me and share your stories with dealing with it or going through it. I need advice. I'm not big on asking for or even receiving help when its right in front of me, but things have changed. I'll try to keep this updated as I can. I hope everyone has a good day.

......

2010-11-24T23:14:00.002-06:00

Hey everyone, its Andy posting and update. This is not one I want to post, but feel as I need to. Today, 11-24-10, I was helping Sandy around the house walking from the couch to the bed to the bathroom and back to the couch and she looked at me and said that she needed to go back to the hospital and could not do it like this anymore. This coming from Sandy, if you know her or have read her blog posts or have heard about her is very disheartening. Sandy is not one to want to go to the dr or the hospital. It is a last resort for her. She got taken off of her trial drug last thursday because it had stopped working. For the past three weeks Sandy has gotten steadily worse in functioning, but since Saturday I've noticed a big difference in her energy, strength and all around demeanor. Sandy has no strength at all and even going out of the house or even being awake for an hour at a time wears her down and makes her sick to her stomach.(as if she wasn't already sick to her stomach). Well her local oncologist came in today and said from looking at the scans they did today as compared to the last ones a few weeks ago he wanted to give us a straight answer and not beat around the bush. He stated that it may be as little as days if that for Sandy. (we are praying and hoping for the miracle that will prove this wrong and be something for the medical books to write about) Sandy is not one to give in like I said before. She even joked with me and her best friend Lindsay that she has to have more than just days because we got given tickets to go watch the Tennessee Titans play on December 5th and she couldn't miss that. I don't know what else to write on her but Sandy does enjoy visitors, cards, e-mails, or just thoughts and prayers and she is admitted to MTMC in room 545. I still say that 5 West has the best nurses of anywhere. On another note as of 11-22-10, I have been married to an amazing woman for 7 years and I want to be selfish and have many more to come so bring on the prayers! Oh my sister, her husband, and my 5 and a half WEEK old niece came to visit so Sandy could meet litle Sophia and they are watching our kids at our house until they have to head back to Iowa on Friday. Sandy really perks up when she sees Sophia, its an amazing site.

oncology AND food

2010-11-12T04:17:00.004-06:00

Big THANKS to the LOVE BOMB! How cool was that getting all that support and lovely comments!?

This week at my oncology appointment we talked about my pain care and the importance of it working so that I am able to keep food down. The problem is that if I hurt too bad, I start throwing up, and then I get dehydrated and it just gets to be a mess. So, what's the difference between home and the hospital? How I get my meds. In the hospital I can do a lot of things via IV. We are trying to get a PCA pump that I can have at home ( it will administer pain meds on a constant basis ), so that I can greatly reduce any other type of pain medication I'm taking, and that will reduce my nausea. Then I can also eat and drink water! Which would keep me out of the hospital.

Seems like a no brainer, but I have to get right dose (which we think we have), then I have to have a physician that will sign off on it (I don't think we have one of those just yet). I was told if I would just join hospice none of this would be a biggie, and hospice would set it up so I was "comfortable". BUT, here is the thing. I can't still be on trials and "fight" (for the most part) if I join a hospice program. Hospice is like saying you'd like palliative care to just take the driver seat, and you'll fight what you can. Well, I'd like to have palliative care in the passenger seat allowing me to be comfortable WHILE I fight. Makes sense to me. Who wants to choose between being pain free-ish and great limiting your ability to fight for your life and choosing to fight like hell but feel that way too?

In other news, my mom has been staying with my during the nights this week so the kids could have a more "normal" week and that has been really nice. I get to ask her to climb in bed with me, and then cuddle. :) I love my family.

Andy's update

2010-11-02T09:35:00.003-05:00

Hello all,
As most of you know Sandy is in the hospital currently. She went to her primary care doctor last Tuesday due to troubles breathing and pain in her lower back still, which she waits to see a doctor until she physically cannot do things on her own. Needless to say he admitted her and we are at MTMC room 545. I've been trying to keep things updated on facebook, but know that not everyone has that or is my friend on their. First off I'll start with the good news before I go in detail on what is currently medically going on. Sandy has a friend in Indiana that she grew up with and is involved in a small group at church there. They have been praying for Sandy and us and when they found out that I wrecked the van and were looking for a vehicle a young couple whome I had the pleasure of meeting decided to loan us a car for the time being and said it just sits in their garage most of the time. That was and is amazing from people we do not even know. Thank you all again it is nice to be mobile once again.

Medically: Sandy is in the hospital due to uncontrollable lower back pain, uncontrollable nausea, having a difficult time breathing, being dizzy. Most of this is explained from the tumors currently and the current trial she is on either not working or working very slow at this time from the last hospital visit. Yesterday she had an MRI of her back/spine area to see what was causing the pain. This morning the oncologist came in and said that there are spots on her spine/ pelvic area. He also said that she is to stop the currently trial now and they will do radiation on the lower back to help ease the pain, but it may take a couple weeks for that to kick in. He also state that by doing the radiation and decreasing the pain it will in turn be able to get her off of some of the pain medications soon and should help ease some of the nausea. They all seem very dependant on each other to me but they are the experts and I let them do their work. Sometimes it feels as if I could have my medical degree by now. We have also spoken with palliative care team here which is a fancy word for help get you comfortable and ease your symptoms team. They are in the process of concocting a plan to help with the medications and possibly reduce some by getting some that work better for her and so forth.

We did get a refferal to speak with hospic over the weekend, but after speaking with a very nice nurse came to the conclusion that it is not an option yet. Sandy and all of us surrounding her still have fight left in us and are not willing to lay down and just stay comfortable. The option now is trying to get hooked up with a good home health program that works well with her doctors and let them help us around with Sandy and things at home.

Sandy does enjoy visitors and cards or just thoughts and prayers. Right now she is at MTMC in Murfreesboro in room 545. Hopefully they can get things in order for us and we will be able to go home soon. This is getting kind of long and drawn out but I have to say thank you to my parents for coming down and spending the week helping out, Sandy's parents and family for helping out, all the friends and family that have come to visit or praying, all the nurses and doctors at MTMC and TN oncology everywhere in between they are all amazing.

the cancer diet

2010-10-22T13:34:00.002-05:00

At the oncologist's office they were asking me a lot about my appetite, because I've lost a lot of weight since my last visit. It is the cancer diet. There are days when I just can't get hungry, and I have days when I am hungry but whatever I attempt to eat doesn't look good/ smell good/ taste good. I can sit down in front of a plate of what used to be a favorite of mine and literally throw up just from looking at it. Appetizing, eh? Granted, I need to lose weight- so I'm not in danger of becoming emaciated or anything. I think it just messes with my blood sugar and energy levels when I can't eat. I've tried those Ensure drinks, but I think they taste like chalk.

I'm feeling really ill today. I know I just got out of the hospital, but I hate that I don't feel any better. I'm still having a hard time breathing, and I'm in a lot of pain. I feel like I have a "fuzzy brain". I'm just so tired that it almost hurts my body to stay awake. So, I'm going to go for now and sleep some more I guess. Seems to be the things I'm best at this week.

Day #1 (AT HOME)

2010-10-20T16:22:00.003-05:00

I was released yesterday from the hospital after being there exactly 3 weeks. The nurses on my floor were all coming around to say goodbye to me, and it was sweet- but I was so ready to get out of there! The last 2 or 3 days that I was in the hospital were spent being mainly concerned with pain management. I am in a pretty extreme amount of pain and it had to get under control in some way other than being hooked up to a pump. Fortunately, we did find something that is seemingly works.

We thought we had something worked out car-wise, but it fell through- now we are looking at possibly having to do one of those lot-financing things which has me really bummed because I know they charge a crazy amount in finance charges.

Medically I guess I'm just doing so-so. I've definitely been worse, so I don't want to complain about it. I have tumors in my lungs that are making it difficult to breathe. When I was at the hospital I was on the oncology floor, and someone passed away while I was there. It was very hard for me to watch their family walk down a few at a time to say goodbye and then walk back by my room in solid tears. It was hard for me to actually watch the patient wheeled out in those blue bags that zip up and cover everything up. There were a lot of tears on the oncology floor from family members. Gracie cried several times visiting me, Andy cried, my mom did a lot of "trying not to cry". It is very frustrating to have this disease growing inside of me and it is trying to kill me, and I just want to live.

That's my key though- I want to live. So, whatever life seems to throw my way I am determined to survive it. Lost my job, lost our only vehicle, ended up in the hospital for 3 weeks, Andy didn't get a promotion he interviewed for... and I sometimes feel we just keep getting hit over and over again, and I just remind myself that we have to fight. Andy sometimes needs me to tell him out loud that I won't give up- there were times in the hospital over the last few weeks when I was having a hard time breathing, and I was in pain, and I was throwing up and then I'd get a minute to just kind of lay back and rest my eyes and my body and he would just need me to tell him that I'm fighting. My family sometimes just needs to know that I'm not giving in, and at the same time I need to hear that there are people out there who don't want me to give up!

Okay, I'm really kinda dopey feeling because of pain meds, so I'm going to just stop writing!

God bless.

Day #11

2010-10-08T23:44:00.002-05:00

Day #11 is coming to a close at the hospital (in 15 minutes and probably before I finish this blog technically Day #12 will have started). The new hospital is nice, and I'm thankful that if I have to spend a lot of time in the hospital I have a big room, with a private shower, and a nice view.

Medically here is what is going on... my pancreas is still swollen, I've been stuck a LOT. I have had 5 working IVs total, but to get just one of those IVs a couple of days ago it took three people and 12 attempts! So, you can imagine what my arms look like. I am in a lot of pain, but it is being managed to some degree. I have no neutrophils (the part of your white blood cells that fights infection). I am on neutropenic precautions because of that, and it is kind of weird because my chemo drug doesn't cause the loss of neutrophils, so they can't figure out why I have none. I'm taking neupogen shots in the meantime to try and raise that count. The other thing is I keep running fevers and they can't find a source of infection, so they have basically had me on IV antibiotics since I got here. The tumor on my neck appears to be growing or swelling and it is causing some pain- my nurse is actually currently calling the doctor to see if there is something we can do about the neck swelling and pressure since compresses haven't been working and while the dilaudid helps my back it doesn't seem to help that tumor/lymph node thing.

Neutropenic precautions- I can't have any flowers in my room, no eating fresh fruits, no eating fresh veggies, no eating black pepper... if I leave my room I have to wear a mask and more or less avoid the general public. I can have visitors, but they have to be healthy and have to wash their hands when they come in my room (it is like visiting a newborn, lol). I have a can of hand sanitizer next to my bed and I get to spray people down, haha.

I really really appreciate all the well wishes/ prayers! And I am super thankful for all the emails, texts, and phone calls. I know it takes some time out of your day to pick up the phone, or to swing by the hospital- but it has made a HUGE difference in my hospital stay.

I'm not sure at this point when I get to go home. My oncologist feels like if it is safe enough he'd like me to get home and be followed daily as an outpatient. He more or less said that I have stage 4 metatastic melenoma and if possible I need to be spending these days that I have with my family and not in the hospital. However, the doctors treating me here at the hospital are very weary about sending me home with the on and off again fever and now with being on the neutropenic precautions. Judging by what the doctors have been saying Sunday is probably the earliest I would be getting out of here.

Well, my eyes keep slamming shut, but before I get off of here I have a request! Our van ended up costing more to repair than it was worth, and since the crash was deemed Andy's fault and we only had liability insurance we don't get any insurance money. So, here is the request: Do you know anyone (or are you) selling a vehicle?? The kicker being while we do have about $1500 (maybe closer to $2000) saved up to put down on the vehicle we won't be able to finance through a bank so we need someone who will owner finance with us, and depending on the total price we could more than likely pay it off completely in April when we get our tax return money. We are looking for a mid-size car or small SUV that is decent on gas mileage. Our van was our only vehicle, so we're looking for something asap.

Alright, I can no longer keep my eyes open! I didn't proof-read this, so excuse any typos.

God Bless.

Things I Want

2010-10-03T22:17:00.002-05:00

I have been in the hospital since Tuesday now. On Saturday (yesterday) we moved to the new hospital. It's a really beautiful place. I have pancreatitis, a kidney infection, and keep running a fever off and on for an unknown reason. So, I'm on an all-liquid diet (eck) and I'm just here until the fever gets figured out and I can hold food down. I was thinking about some things I want and decided I just write some of it down for fun. Of course, these are all pretty silly materialistic things. What I want most is health and to see my kids grow up :)

I want to take Andy to Chicago, IL so that he can see his very favorite team (the Cubs) play at Wrigley Field!

I want to take my family to Fall Creek Falls, and be healthy enough to hike to bottom of the falls with them!

I want get a box at a Titans game and invite my closest friends and just feel super special while seeing my first NFL game not on TV.

I want to see the Tran Syberian Orchestra!

I want to take my kids to Washington D.C.

I want to take my Dad to an Eric Clapton concert.

I want to take my family around the world so they can see and experience other cultures... not just touristy places.

I want to get a car that is safe and decent on gas.

I want to take a vacation with Andy, even if it is just a weekend in Nashville... I just want to spend time with him without the kids and without being in the hospital.

I want to take an Alaskan cruise.

I want to finally get the digital SLR camera I've been looking at for over two years.

I want to wax my legs!

I want to go back to Hawaii.

I want take my Mom and Sisters all on a spa day and spend an entire day at a nice spa being totally pampered.

I want to take my family in Iowa and my family in TN and all spend a week at a big beach house on Dauphin Island.

haha, I could just go on all night I guess....

2 days and counting

2010-09-29T22:40:00.002-05:00

I went to my doctor's office because I thought I may have pneumonia. The good news is that I don't have pneumonia. The bad news is that we don't know what is wrong with me. I almost blacked out, and then I started throwing up at my doc's office- so between that and all the miserable symptoms my doc admitted me to the hospital. Today is the end of Day #2, and I spent the first half of the day with a fever and doped up so much that I basically slept through everything. I am on a clear liquid diet (tasty), and I didn't throw up today because I was on enough anti-nausea meds for a small army. I also had to discontinue my chemotherapy for the time being, because I do have at the very least a kidney infection.

Thanks for all the thoughts and prayers. I really appreciate them.

We still haven't heard back about an estimate on getting the van fixed... the wreck was cited as Andy's fault so we will have to pay for all the work on our vehicle out-of-pocket. We have liability insurance though, so at least our insurance is going to fix the other vehicle... I'm trying to find the "light" in this situation, but eh.

And in more news... I've lost my job. I wasn't allowed to miss more than one day during training, and I can't work from the hospital.

I'm just going minute by minute here at this point. How else do we all get through each day? I have to say that I feel like anytime life wants to throw me a little break I will very gladly take it. Until then I'm so thankful for my family and my true friends.

God bless.

but I'd rather have cancer...

2010-09-26T22:11:00.002-05:00

Oddly enough there have been several times during conversations about lupus over the past few years when the question would come up "would it better to be have something like cancer?" The reason the question comes up is because with Systemic Lupus Erythematosus (SLE) there hasn't been a new drug in over 40 years, there is no idea how to "cure" it at all, and so many people don't even have a clue what it is. When you have SLE so many times you have to spend 15 minutes just explaining what it is to someone, and then people still don't quite understand usually what you go through that it can be a very frustrating disease. However, everyone seems to know what cancer is, and you constantly hear about raising money for cancer research. People are very scared of cancer, and it has touched many people's lives in a very negative way- so not only do more people take you seriously when you say you have cancer, but many medical professionals do. When I just had SLE I can't tell you how many doctors I went through trying to find one that understood that I'm not delusional or a cry-baby, but in serious pain and dealing with serious exhaustion among other things. When I was diagnosed with cancer I had a plethora of specialists at my fingertips to choose from... okay, that is a bit of an exaggeration because I had to be accepted into trials because of the the type of cancer I have... but still, the help is out there. So, when the question would come up... the first answer was always "I'd rather have neither!" but there have been a several times when I have said in the past "yeah, I think I'd rather have cancer than lupus." That is how severe my lupus is.

Never in a million years did I think I would have both.

I remember when Payton was a baby my fingers would get so swollen, and my hands would be so tender that I couldn't pick him up the way you would normally pick up an infant. But, as a mom you have to pick your baby up a lot during the day. I would have to lean down into the crib or bassinet and slide my arms underneath him, then I'd pull him towards me and I'd slide one hand behind his head and I'd basically slide him up against my chest to provide the support for his weight and I'd lean backwards and that is how I had to pick up my baby. I bought a sling and wore him around often so that he was already right there when I needed to nurse him.

When he was a baby I ran a fever of over 103 every single day for weeks. It literally got to the point that I felt like my brain and skin were frying on the inside. Then I developed a rash all over my face, arms, back, and chest that itched and burnt at the same time.

At this time I had a newborn and Grace wasn't even 2 years old yet.

I had what is referred to as debilitating fatigue. It isn't your normal I've had a long day kind of tired. It is actually being so tired even though you've just had a night of sleep that you literally can not keep your eyes open.

Can you imagine being swollen, covered in a rash, with fatigue I couldn't control, and running a fever and every doctor you see says it is just because you're a new mom? I was told that it was all in my head, I was told I had post-partum depression, I was told that I was just being lazy, I was told that every new mom is tired... toughen up. It was actually an allergist that I went to see for the rash that told me he was 99% sure I had SLE (something I had never heard of).

I've spent the last 4 1/2 years dealing with SLE. In a small nutshell during flares I've had strokes, I've spent an average of 2 days a month in the hospital... the longest stay being 6 consecutive weeks at Vanderbilt, I've had my spleen removed, I've gone from not even taking tylenol for pain on a regular basis to taking narcotic pain relievers on a daily basis, I have to take muscle relaxers in order to fall asleep because of the severe muscle spasms I have when I lay down at night, I have what people call "brain fog" that is better some days than others... but I take notes during basically all conversations I have or else I can't remember the conversation at all just a day later, I am allergic to the sun so I don't go outside much and I ALWAYS wear sunscreen (hello irony of getting Melanoma), I'm swollen, in a lot of pain, and on a daily basis am extremely tired. That's the nutshell prior to cancer.

Then I get told I have cancer. Cancer has been another ball game. To be told I have cancer, and that of all things it is Stage 4 Melanoma... when Andy and I first heard Melanoma we thought "oh that's the easy one, right?" I was thinking no big deal, they'd just cut it out/off or whatever they do for Melanoma... that I might have to spend a little extra time at the dermatologist office, but at first in my head I was thinking it was not going to so serious. That's when I really paid attention to my oncologist's face and I saw the sadness that was there, and I listened to his voice and I could hear the pain in what he was actually telling me, and I realized it wasn't going to be so quick and easy. I tear up when I think about it now, because I can remember the sadness in my oncologist's eyes, followed by seeing the fear in Andy's eyes... and at the time I was pretty numb and all "I'm a fighter. I can beat anything, etc..." but it has been like that ever since. I try to not let myself feel the fear or sadness that comes with such a difficult diagnosis.

Lately, I guess since I've been sick a lot, it has just been hard. I guess that is also how I ended up writing two blogs so close together.

Fall

2010-09-26T13:52:00.003-05:00

It is officially Fall, and this is my favorite season of the year. I love that everyone gets hyped over football, you can find spiced cider, the weather is cool but not cold yet, the leaves are changing colors, and my favorite holiday (Thanksgiving) will be just around the corner. I love Fall.

This Fall is especially exciting to me, because I wasn't sure if I'd see it this year. I remember after I was diagnosed and got all the statistics and "facts" about Stage 4 Melanoma I went through the thoughts about my family and in particular seeing my kids grow up, but I also remember thinking "what if I don't get another Fall"?

We are doing a lot of adjusting right now, and yesterday through us a little surprise curve ball to add to the mix. Yesterday Andy was involved in a crash with our van, which also happens to be our only vehicle. The van isn't totalled, but it isn't drive-able right now either. When it happened yesterday I lost it... well, not at first. At first I was so thankful that no one was hurt that I didn't think about much else. Then it dawned on me that our only car was now not operational, and even though we have insurance it is just liability... so if they decide the wreck was Andy's fault we would have to pay for the van to be repaired... all the meantime it isn't like I can take Grace to school and pick her up in Andy's patrol car! Maybe I had no right in thinking this, but I definitely had a serious "why me? why us?" moment. I cried, I threw up, I cried some more, I called into work, and then I curled up on the couch alternately crying and sleeping for awhile. That might sound extreme, but I'm going to say it wasn't just the van.... but everything seemed to be piled up at that moment. Right now I am trying to work full time so that we can get out of debt and pay for things like kids' dentists work... and every work day except one I've started my shift running a fever and feeling rather crappy. With enough tylenol I can usually break the fever, or I just work 8 hours sick and achey. There was one shift where I worked while throwing up the entire time (thankfully I wasn't taking calls that day so I was able to just hold a small trash can and throw up while taking tests on the computer). It is probably a combination of the cancer/chemo/lupus, but I'm just exhausted all the time. My job consists of taking phone calls that are literally back to back for 8 hours (unless I change my status to "break" as soon as one call is over the next is waiting). That is great job security and all, but the calls are actually really draining for the most part, and 99% of the people I'm talking to are very upset when they call in. Sometimes I just wish for 15 seconds between calls so I can take a breath (and a drink of water). By the end of my shifts I've basically lost my voice, and I can't even stand to look at my computer anymore. I also chose to work on all the days Andy has off, so that we would need less help with the kids... which works in that regard, but because Andy has also been taking extra duty whenever he can I just never see him it seems. I miss him. I also don't see the kids much, so I miss them a lot, too. The days I don't work (like today) I'm so tired and in so much pain that I can't do much of anything besides cuddle with my kids and read to them (which I really enjoy), but I also wish I wasn't shaking and running a fever and barely able to keep my eyes open!

So... yesterday it all just kinda came out I guess. I just felt sorry for myself. I felt really bad about myself for calling out of work, and it was one of those days.

Today I'm just trying to be thankful. Everytime I start feeling sad I am trying to remind myself that a) I have a lot to be thankful for and b) it could be worse!

And most of all today I just keep reminding myself how incredibly AWESOME it is that I'm getting to experience Fall. Which I plan to experience many more times, btw.

God Bless!!!!

here's to 60% more

2010-09-17T12:26:00.002-05:00

I got results from my scans this week and I am so so happy to say that my tumors have shrunk overall by about 40%. It's not an exact science measuring all those tumors (I mean, I am sure you could get exact if you really came down to it)- but they measured all the major tumors and we got 40% out of it. Some of them had only shrunk 20-30%, but the others had gone down as much as 60%! I'm so happy, but I also realize I'm not even half way there yet... BUT at least we're on the right track!

I'm also working on re-vamping the blog to make it "pretty" again. I have a 3 day weekend this weekend, so in addition to catching up on my housework maybe I'll tackle that as well.

I'm done training today.... well I'm done with the classroom portion. I take live calls for the next two weeks while I'm still under the "training" label. So, I will be monitored more during that two weeks, and I have to score well on my quality assurance to keep my job. But, I'm ready for it. I've been paying attention, and hopefully I can't screw anything up too bad.

Here's to 60% more!

God Bless.

just a few more hours is all I need

2010-09-12T22:12:00.002-05:00

I just need a few more hours in each day I think... of course, when I think that I always remind myself that every person in this world who has accomplished amazing things had the same 24 hours I have. I'd like to stay up late tonight and write a longer blog, and redo my entire blog layout. I need to study more for my Xbox test on Tuesday... unfortunately, if I miss out on too much sleep I end up really sick and in the hospital. So, I'm just going to do a real quick update and hope I find some time at some point this week to get my blog looking pretty again.

I have to get up bright and early tomorrow because I need to leave Murfreesboro before 6:30AM to go to my first CT appointment in the morning... and while I'm driving up I get to drink two giant bottles of that nasty contrast. Bleck. Seeing as how I can barely tolerate water in the morning I can't imagine how the contrast is going to go down. Then I have another CT appointment at 9 something, but I was having my blood drawn while Andy was taking care of setting these appointments and he didn't write down when the second appointment was and has lost the papers about these appointments... so I don't know where I'm supposed to go or anything. So, I will call around tomorrow and try to get that figured out after my first scan and hopefully before the second one!

I have to work from 2PM- 10PM, and I'm going to have to be super-focused during work tomorrow because I have a big exam on Tuesday and if I don't pass it I lose my job (no pressure). You'd think these exams wouldn't be crazy hard since you don't get to keep the job if you fail- but aha you'd be wrong! We lose people after each exam, and they aren't easy at all... very detailed and technical. It's a good challenge though.

OK, I have to go to bed now, because I have to be drinking contrast and driving to Nashville in 8 hours.

God bless.

lips are sealed

2010-09-01T13:41:00.002-05:00

Have you ever had things "in the works" so to speak, but you couldn't talk about them until they were more finalized and it just drove you crazy?? haha - That is me right now. I want to write about what is going on in my life more, but I'm a little limited right now to just on-the-surface things. So onto things I can actually talk about...

The job I have requires that we have Yahoo Messenger up and running while we work, because it is how our supervisors talk to us a lot of times when they don't want to talk to us in the room in front of everyone. I don't mind having it running, and I set one up specifically for work so that it wasn't like I had all these random IM's coming to me when I was trying to watch for the work ones... but there is a lady that just won't stop talking to me, lol. Oh my goodness... just on and on and on about nothing more or less. If I quit responding to her for any amount of time she freaks out on me wondering where I went and if I am okay. Whew.

Speaking of chatting while at work... I keep the iPad running while I'm working with AIM/ Facebook chat up. I like having it here while I'm working, because once I login to the secure desktop for work I can't access my own computer behind it. So, it's been handy.

Andy is working today during the day even though it is his day off. He has some required class he has to take today and tomorrow. I would have had had Payton with me all day today, but I had to take a test for work this morning and if I failed it I'd lose my job, so I took him over to my mom's house after I dropped Grace off at school. I did pass the test, btw! After my mom brings the kids home this afternoon Andy is going to take them to the library to get them out of the house (give me some quiet)! It's really been a juggling act with the kids and making sure there is someone to get Grace from school or to watch them in general. Lucky for us they are really really good, so there have been times when I've worked and watched them at the same time and haven't had any big issues. A little more stressful for me because I'm trying to concentrate on them and work and make sure they are totally quiet and occupied... but no big deal.

I've been TIRED. It has been a LOT of multi-tasking. I'll work and be studying then get a break, so I'll get up and bathe the kids or get them food or tuck them in (whatever time it is), and then it is right back to the computer for the rest of my shift... and the work is actually very time consuming and I don't want to say "hard", but it isn't easy stuff. There is a lot to it. My feet and legs have been soooo swollen, and I've been getting headaches. I lay down at night and I just want to sleep, but I ache so much it is hard to get there. Then I wake up all throughout the night thinking about things I need to do half the time. My stomach has been one of my worst enemies! I get terrible waves of nausea that literally can knock me over during the day. I can't handle them except for when I'm driving. I almost had to pull over this morning, because I had such severe stomach pains for a few minutes- but I was so close to my house I just thought if I could make it there I could collapse on the couch (and I did).

I have just been praying a lot for energy and strength! I know my body definitely needs it to beat the cancer, and to fight off lupus flares... but I'm also trying to live my life outside of the "sickness" that has been ruling it, and that takes a lot.

I have also been praying a LOT about the stuff that is in the works that I can't really talk about just yet... well I could, but I feel it would be premature. I'm just praying that things fall into place where we need them to be, because we are trying to "simplify" in a lot of ways I guess you could say. :)

Well, my training class has started and so my attention is now shifting over there!

God Bless.

xbox

2010-08-30T22:05:00.003-05:00

It's been a week since I've written anything, and honestly, I spent so much time tied to the computer working that when it was quitting time I pretty much stayed away from it! :) BUT... I'm going to update even though I just got off.

Work has been going well. I'm just in that initial training phase, so I haven't gotten to take any calls or anything- but I think I will like that job. It's funny because a lot of the people in my training class are like "super gamers" and they really know their Xbox... and I'm like "yeah... I own a Wii... because I play the Wii Fit Plus...." :) I'm not anti video games or anything, but I've never been able to sit still long enough to really play them. That's why motion games on the Wii were basically made for people like me. However! The Xbox is coming out with a really cool thing called Kinect. It has sensors in it, and everything is motion activated but you don't have to use a controller at all. Your body is essentially the controller. It might be what Santa brings the Towle family this year if I continue to do well at this job (i.e. continue to have a steady pay check, lol).

This past weekend was a lot of fun. Saturday morning we had a family photo shoot done by my friend, Becky. The pictures turned out beautiful! After pictures Andy and I took the kids to the Discovery Center for some fun inside (AIR CONDITIONING). They had a blast. Andy had to work, so we came back home and the kids both took naps while Andy got ready for work, and I tried to nap but was totally unsuccesful. Saturday night was the benefit at Bobby McKee's- which was AMAZING. The music was fabulous, the auction went really well, and most of all I had a lot of friends show up and I just really really enjoyed getting to see people and be around adults. Yesterday after Andy went to work I took the kids to Sports*Com to get their swim on. We got there and Grace of course ran ahead and was in the pool before I was even undressed. As I got in the pool I looked over at Grace and she was on someone's back! I thought good grief she makes friends fast, but then I realized it was our friend Gaby... which made me realize my friend Crystal was there and that was great fun for me. Today Andy & I took Payton over to the mall to play for a little while at the indoor play area before we both had to work. This afternoon Andy and I both worked... although I just got done, and Andy doesn't get off until 1AM. I don't know which I'd like better the 5 8 hour shifts or 4 10 hour shifts. Either way I'm just thankful we both have full time jobs right now.

I'm feeling okay. I'm not really sleeping... at night I kind of nod off for an hour or so and then wake back up wide awake for a few hours, then I'll nod off for 10 or 20 minutes and wake back up and continue on doing that until it is time to get up in the morning. I feel like I have a lot of stress in my life, but I'm trying to just put on my big girl pants and deal with it. I definitely don't want to play the sick card or anything. I truly believe that everyone is dealing with something stressful in their lives- whether it be big in the grand scheme of things or small... I just think we should all remember that when we interact with people.

On that note, I'm going to get some sleep hopefully... maybe just a little good rest. Anything at this point would feel grand.

God bless.

fighting

2010-08-23T16:27:00.003-05:00

You know that feeling you get when you come down with the flu (or something similar), and it just takes so much of your strength to fight it? Having aggressive lupus is like that constantly. Then when you add stage 4 cancer on top of that...

I can literally feel my body fighting. Today has been one of those days when it hurts to breathe, my eyes feel like it really takes extra effort to just focus on things and stay open, my muscles feel like I've run a marathon, and my joints are swollen and red and achy. My chest feels like an elephant is sitting on me, and even something as simple as peeing takes so much of my energy it almost makes me laugh. I am fighting though. In a weird way I feel like I could give in and that would just be it. I guess it is a good thing I'll never just give in. :)

I start a job tomorrow that I got to work from home, and I'm praying constantly that I'm able to do it. When we moved into the house we are in now I had been working at the Murfreesboro Police Department for about 5 months, and I really thought my health was getting better. I never imagined that in another month my lupus would have taken such a drastic turn that I'd start having mini-strokes, be in my wheelchair constantly, unable to drive, unable to take care of my kids without help... at that point in my life I had to have Andy help me with everything from getting out of the bed to even washing my hair. And that was before the cancer. Now I'm battling both, and sometimes I just wonder why it happened like that... it doesn't seem fair.

I spend a lot of my time... I don't want to say pretending to feel better than I do, but that is basically what it boils down to. I don't do it just for other people though, I have to pretend to be better than I feel for myself, too. Otherwise I'd just stay in bed I guess. So, I wanted to write about how I really actually feel...

I feel awful. I have to think about breathing. When I walk I have to think "step, step, step". When I have a conversation with someone it is all I can do to remember all the conversation 5 minutes later. If it wasn't for my cell phone I'd be LOST. It has all my appointments, phone numbers, I use it as a GPS, it has my email, and my medication and allergy list... it has my notes that I take for everything just to remind me of what I need to be doing during the day. I feel sometimes like my brain is just mush. Mushy brain is incredibly frustrating for me, because I'm a smart person... so when I can't even complete a thought it drives me insane.

My back hurts, I can't sleep well at night, my fingers are puffy and painful, I'm developing a very painful rash on the top of my head (side effect of chemo)... and my feet and legs get so swollen I feel like at any minute they will just pop through my skin.

I haven't even started about my stomach. I wake up with it hurting, I go to bed with it hurting, and in the middle of the night I wake up b/c of the pain or nausea.

There are moments when I feel like I could just cry all the time. Everything just hurts... my skin hurts and sometimes even the sweetest little touch from one of my babies makes it feel like I've been burnt. Even my teeth have turned sensitive!

This is why I was looking for a work from home job... I'm hoping that even at my worst I can curl up in my office and try my hardest to work b/c we need the paycheck. Like I said, when we moved into our home I was working, and then I started having strokes and couldn't... so, we've been surviving totally on Andy's salary (and just recently the kindness of others to help with some of the medical bills). But now with the medical bills on top of what we already couldn't afford I know it is just too much on Andy. I'm so so thankful I got this job, please say a prayer that I am able to keep it and do well with it!!! Andy does SO much between working full time and then having to be my caretaker and a lot of the time the kids' as well... he needs some stress relief for sure.

So, back to fighting... I am fighting with every ounce of my being, and I wanted to write about it b/c I needed to. If you are reading this b/c you have lupus or b/c you have cancer (or maybe you have both, too)... you're not alone if you feel like you're constantly losing an uphill battle.

This is the hardest thing I've ever done in my life. There are moment when it just looks bleak and I wonder why in the world am I doing this... I have moments when I think it would be so much easier to just not fight it all anymore.

Then I look at my friends and my family and most of all my sweet babies... and I'm reminded why I fight. Life is so beautiful.

God Bless.

rain rain go away

2010-08-21T15:08:00.002-05:00

Seriously... I feel like it has been raining for a month solid around here.

I'm having a cancer-y feeling day today in some ways. My legs and feet are so swollen! It's a side-effect of the chemotherapy. I need to do a little bit around the house today, but walking around on my swollen feet is just a little miserable. My stomach has also been upset pretty bad. I guess I'm thankful they make medication for upset tummies!

I feel good in other ways though. I spent the afternoon with friends yesterday at the swimming pool playing and then went to breakfast this morning with another great friend, and so my spirits are up! Being around people I love is always a good thing.

The kids have been really good today, even though we've been cooped up inside all day. I'm so thankful for well-behaved children... I can imagine things would be so much harder if they weren't as sweet and flexible about things.

My hair is still growing in curly. I just can't wait for it to get long enough that I'm not always wearing a scarf or hat.

There is a possibility that I have a blockage in my kidneys, and so I think I'm having tests this week to find out for sure. My lupus attacked my kidneys in the past, and I have cysts on them from that. I also have tumors on my kidneys from the cancer. SO... due to my symptoms my doctor thinks a blockage is possible. I really really hope not, because from what I've read if a blockage doesn't take care of itself surgery is always recommended. I think it is a Mother Teresa quote that says something about God not giving me more than I can handle I just wish He didn't trust me this much! That's how I feel about this kidney blockage stuff. I know if that is the case I can handle it, it will get taken care of, my family and friends will be around to help out if I was to have to go under the knife and that ultimately God will see me through it all... I just don't want to have to deal with it. :) I've got enough going on without adding more at the moment.

I feel like my faith could move mountains lately. My relationship with God has just been so much at the forefront of my mind. I'm hoping I can make it to church tomorrow! I haven't been in well over a month... but since Andy works on Sundays I don't push myself to go if I'm not feeling well. I know on days Andy works I have to be extra careful about conserving my energy so that I can handle the kids from the time he leaves until they go to bed. It isn't that they are difficult, but they are still at ages where they pretty much need an adult all the time. It isn't like I can just say "okay, go play in your room"- they would either stay for about 5 minutes and then be bored and back out to have me play with them OR they would attempt to occupy themselves by pulling out everything in their room and I'd end up having to spend an hour putting it all back together. :) Lucky for me, they love to play board games, read books, color, paint, etc... so we don't always have to be go-go-go'ing.

Well, I really do need to get some stuff done. My laundry hasn't learned how to fold itself yet. I hope everyone is having a fabulous weekend.

God Bless.

Puzzle Pieces

2010-08-20T12:48:00.002-05:00

Do you ever feel like your life is a giant puzzle and you just can't seem to get the pieces in the right spots? They are all there, and maybe all the edges and corner ones are together... it's the most middle pieces that get confusing. They sometimes all start to look the same, or you get a whole section together and you're just missing that one little piece to complete it.

I feel like that so often. I feel like everything is just really coming together, but then I'm just missing something... and what I realize every single time is that I'm missing God. I'm so guilty of when I really need Him and when things are really going downhill I fall to my knees and cry out to Him. I pray and I pray hard, and I really get into reading my Bible. Then, He answers me! And what do I do? I forget to say "thank you." I go on about my business and I think "man, things are really going great"... dare I say it, but I sometimes even think "man, I am so great. I sure am amazing for pulling everything together." No wonder I get that nagging feeling that there is a piece missing.

This week I got hired for a work at home job, and I lost a little more weight, my kids have been exceptionally well behaved and funny, my relationship with Andy has been so smooth and fun to be in, my tumor on my neck is shrinking... and I realize I need to fall right back down to my knees, I need to pray and pray hard, and I need to really dig into my Bible- I need to shout from the roof tops THANK YOU LORD.

Don't forget to praise him!

God Bless!

Ways to Stay in Touch with Moi

2010-08-19T18:39:00.003-05:00

I've realized how much I used Facebook to stay in touch with people, and while I'm still not up to having Facebook again right now I wanted to just let people know how you can stay in touch with me or chat with me. I'll be on the computer a LOT with my new job (4o hours a week), so when things are slow and people's xbox's aren't going crazy I'd definitely love to talk to you online.

Chatting:
I used to have it all, lol, but I'm down to just AIM. My SN is Seguirlo838 (the story behind my SN is that Seguirlo is Italian for "to follow him" and 838 is paying homage to my favorite Bible verse Romans 8:38-39 - "For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord." -- doesn't that verse just fill you with comfort and hope?) So, that is me on AIM- it is also on my phone so if you send me a message and it says I'm online but I don't respond it could be that I don't have my phone on me OR that I'm working and can't chat at the moment.

Email:
I know you're not really supposed to just throw your email out on your blog, but (knock on wood) I've never had a problem with spam from it. Thank you Gmail. I'm not super fabulous at always getting back to people right away via email, BUT I'm working on it. sandytowle@gmail.com.

Twitter:
I randomly "tweet". I sometimes put pictures on it, or I use it to update all my family at once if I'm still at the doctor's office or something like that... I usually don't tweet anything of importance, but I'm there. My SN is CallaLilies83.

Phone:
This I am NOT putting on my blog. :) BUT, I am addicted to text messaging, and I love chatting to people on the phone when I feel up to it. You can email, message me, whatever and just ask for me phone number I'd be glad to give it to you.

I have a small prayer request, too... my throat is getting sore and I feel like I'm coming down with something- I am just praying it is nothing at all and I actually get some sleep tonight!

God Bless!

Oncology

2010-08-19T10:42:00.000-05:00

Things are looking good. My EKG was a little abnormal, but I'm still trying to get ahold of my stress. I have scans in 4 weeks, and we will see how things are going on the inside.

A little addendum to my previous post: it's the fact that I don't know who it is that went through my blog and facebook with ill-intentions that got me off facebook. Not the fact that it actually happened. :)

I'm blogging from the road- how cool is technology? We are headed back to Sarah Cannon because I forgot to get more of my chemo drug (oops). Glad I realized it when we were just two blocks away.

We have a friend taking pictures of the kids this afternoon, so I guess I should go home and figure out what they're going to wear. I also have to fill out all my new-hire paperwork.

I sure do wish I had gotten some sleep last night!!

God Bless!

Sent from my iPhone

Change

2010-08-18T20:08:00.009-05:00

People sometimes ask me how I can be so open on my blog or on facebook, and they sometimes don't understand how it is easy for me to be so transparent. I've never had an issue with it in the past, and being so open about what I go through with lupus and now cancer has helped some people which in turn inspires me to keep on going.

Recently, you may have noticed my blog came down and I also jumped ship from facebook. It was a quick reaction to something that really bothered me. Someone (whose identity is unknown to me which is why it weirds me out so much) who was supposedly my friend went through my blog and my facebook pictures and attempted to make me come across as sneaky person to someone I respect very much. I'm not a stupid person, so if I was trying to hide something rest assure I would not be dumb enough to blog about it or post pictures on facebook regarding it. In addition to not being stupid I am not a sneaky person- what you see is what you get. I make mistakes, I forget to do things sometimes, and I make a point to try and own up to those things. I'm far from perfect, but I try my hardest to keep my word and to have a lot of integrity.

That being said at first I decided I was not going to get online at all as far as blogging and facebook goes. I even wrote a much longer blog which went into much more detail and was not as cryptic as the paragraph above this (although I think the people involved will know what this is about). I was incredibly sad about the whole situation. I hate it when people are angry with me, I hate it when I feel like I'm being misrepresented, and I really hate to think that someone who calls themself my friend would do that to me. I felt very violated. It all literally made me sick (and since I'm already sick you can imagine how I ended up).

I'm not sure right now that I will be getting back on facebook. I will write in my blog, but I doubt I will get as personal any more... at least not any time soon. Right now I will just use it to keep you updated on what's going on with my health and basic stuff going on.

I got a job today- it is working from home for Microsoft as an Xbox Support Technician (which probably means I'll be spending most of my time talking about the "ring of death" and connecting people to their xbox live account), but I'm so thankful to be able to bring in another paycheck. Hopefully it will relieve a lot of our financial stress, and I'm hoping that I will feel up to doing this.

I have been very sick to my stomach this week, but I think a lot of that has to do with me being so upset about things going on in my personal life which I've already talked about instead of it actually being from the chemo. Stress is very bad for lupus- it has sent me into the hospital in the past, so I'm focusing now on just trying to not let it eat at me as much as it has been the last few days. I have an appointment with my oncologist tomorrow so I will blog again tomorrow to let everyone know what is going on, and what he thinks about the current treatment.

I'd like to end my blog by clearing one more thing up, and some thank you's.

This is important for those of you who have made deposits to Pinnacle to know... unless you tell me that you've made a deposit to Pinnacle I do not have a way of knowing who deposited what and if it was for a tshirt or not. I only see a deposit slip with the amount of the deposit and teller location when I check that account- nothing more. So, if you've deposited money to that account and I haven't personally said thank you, or if you did it for a tshirt to that account but didn't tell me- that is why.

Thank You's:

Thank you to everyone who has put on a benefit, or is in the process of doing so.

Thank you to everyone who has bought a Team Sandy tshirt, it always makes me smile to think about people wearing them. I love knowing I have such a great support system behind me.

Thank you to everyone who has deposited money into our benefit account.

Thank you to Hayes Automotive and everyone out there who has made it to where we can actually drive our van back and forth to Nashville for chemotherapy.

Thank you to everyone who has sent a card- I have a GIANT stack of cards that I plan on making a book out of. I love looking through them when I am feeling down.

Thank you to everyone who has sent me an email, comment, or message somehow either sharing something uplifting or just to say hi.

Thank you to everyone who has offered up a prayer on my family's behalf. Through God all things are possible.

As always, God Bless.

PS- I can still be found on Twitter for brief updates, and random boring things.