What I miss the most....

I miss my hair so much. Vain, I know, but I miss it. and I miss my dimples in my checks when I smile....you can't see them anymore with the puffiness. I miss getting up in the morning and eating breakfast whenever I want instead of around my medication schedule. I miss having energy. I miss running.

No Surgery for now!

Well finally, I think we have good news! I went to the orthopedic this morning and the doctor looked at my MRI results and also got some x-rays done. He said the radiologist read my MRI wrong and I do NOT have a fracture so that was good. He also does not think this is from the steroids, he thinks its just from the years of me running on them and that this was something that has taken awhile to do. The fluid in my knees has gone down too so the only abnormal part was a piece of a bone that seemed to look "loose". He said I can start exercising low impact, no running, but I can do elliptical, biking, walking & swimming so that was good to hear! If I still have pain in a month, I will have to go back and we will look into doing a minor surgery called Arthroscopic surgery. SO...hopefully the pain subsides and I can move on without doing any sort of surgery!

Going to the U of MN for a 2nd opinion MONDAY!

The U of MN just called and they have my 2nd opinion appointment scheduled for Monday with Dr. Mark Rosenberg. I am surprised they got me in so fast but also very excited about it! Hopefully this can put to rest anything that we are questioning.

This Wednesday I also see the ortho so we will find out then what to do with my knees. I have been experiencing extreme pain in my knees while sleeping which is a bad sign I guess since there is no pressure on them. Please pray hard this week that we can overcome this without needing to do surgery or be in a wheelchair or crutches. With an 8 month old that crawls all over...none of these are really something I can do right now!!!

Starting Friday I am being tapered off the steroids, which was wonderful news for me. It will take about a month for me to get off of them, or at least to get to the lowest dose amount. I have heard different things about when my face will go down. Some say not until I am completely off steroids and some say once I reach the lowest dose. I'm hoping it is the second one!

Hoping to post some positive news in these next few days! Please keep the prayers coming!

MRI results

The nurse just called with my MRI results and unfortunately here I am posting bad news yet again. I yearn for the day to post good news, to tell you all I am healthy and well.

I have AVN (Avascular Ostenecrosis) basically it is not enough blood flow to my bone resulting in a small fracture of the knee. Google it if you want to know more. I'm waiting now for the Ortho to call me to schedule an appointment with them. They will have to look at it and decide if I will A.) be put on crutches ...which actually don't think would work since this is in Both my knees. B.) monitoring/therapy or C.) Surgery. I am required to stay off the knees now, except to walk. No more working out.

The steroids are the cause for this. There is a small % of people that this can happen to and go figure it happens to me!

I have an appointment tomorrow with my nephrologist and I will be talking to him about getting off the steroids and also about getting a 2nd opinion from Mayo. I called my insurance company, and I don't need a referral so I'm thinking it's time.....Enough is enough.

Save the date!

2.28.09 5pm @ Rockwoods in Otsego,MN Lupus Fundraiser! Hopefully we can raise enough money for the Lupus Foundation to start a "Feel Good Program" :) Details still being determined but probably will consist of dinner, dance, silent auction, and maybe even a chocolate fountain:) Hope to see you all there! Invites will be sent out closer to the date, but mark your calendars now! If you know of any companies that would be willing to help out and donate items for the silent auction or money towards something let me or Celeste know!

I had the MRI on my knee today and should know the results in the next few days. I've been trying to stay off of it as much as possible and the pain is not getting any better so we'll see.

Started the new drug,cellcept, and so far no side effects that I can really tell which is great! I also started a "Hair repair" system to hopefully grow some of my hair back...hopefully it works and works fast!

Nolan has unfortunately caught the flu and has been sick the last few days, thankfully I have not gotten it! We will all be getting the flu shots soon and hope that family and friends that are close to us will also consider this! We want to make sure we all stay healthy this winter. The new drug I am on does have the possibility to drop my white blood counts so I still have to be very careful about not getting sick.

I also just bought the book "The Jesus Storybook Bible" by Sally Lloyd-Jones. It is a children's story about the bible. I originally bought it for the kids but decided that I should read it first before I start to read it to them. I highly recommend this to everyone, especially with kids. I am really enjoying reading it and learning so much!

A group from my church from back home made me this prayer blanket. I love it and have been sleeping with it since I got it! I believe it keeps my bad dreams away:) and it is my favorite color!

Treatment has changed

I'm not sure if I am super happy or super confused....the doctors decided yesterday that I will stop chemo treatments. My body doesn't handle them very well so we have to move on to the next step. Part of me wants to jump up and down. No more chemo means no more hair loss, injections, 7 hours at the cancer center, no wigs, and a better chance at getting off steroids earlier. The other part of me is weary though because the drug they want to put me on has not been around as long, doesn't show to work as fast (So my whole remission in February might not be February anymore), and if this drug doesn't work...I go back on chemo and start the whole 6 months of chemo over again....Ross & I talked last night about getting a 2nd opinion at Mayo, however that is a whole big ordeal. I called the clinic there and it is a 3-5 day process so we would have to take off work for a week, get a hotel for a week, and get tests done all week long. With our crazy lives right now and with Nolan we just don't know if this could be possible.

I also told my doctor about my knee pain since it is getting worse. She looked at it and I have some fluid in my knees. I have to now get an MRI next week to make sure my bones have not started deteriorating from the steroids. (Apparently there is a small % where the steroids can deteriorate your bones and you will need joint replacement therapy if this is the case). These steroids are so bad for you, I hate that it is the only drug out there right now to treat me this way. I'm suppose to stop running and stay off my knees as much as possible for now. I'm really asking for some prayers on this one. Exercise is how I relieve a lot of my stress and I love to run. I do not want this taken away from me. I feel like my identity is slowing being taken from me. My looks, my body, the things I like to do, my self-esteem. I'm going to be left with nothing but a drug filled empty body pretty soon.

I'm really trying to hold on to my faith as I know God will take care of me and this road he has me on will only make me a stronger and better person.

"So don't be anxious about tomorrow. God will take care of your tomorrow too. Live one day at a time." Matthew 6:34

Unbelievable!!!!!!!!!!!!

Where do I start with this one....When I started getting chemo, I talked to the nurse about losing my hair, etc and she gave me the card of this "Wig" and "Feel Good Program." I called the wig lady and actually have an appointment with her for next week. The extensions are getting to be a hassle to put in and I'm sick of wearing my hair up to hide the balding spots so I figured I would meet with her and see what she has to offer. Then, I call this "Feel Good Program." It is a one night class where they give you $300.00 worth of makeup and show you ways to help you look/feel better while going through chemo treatments. Basically..make you feel better right?? Well..I call and register and they call me back and tell me I cannot attend because I am not a "cancer patient." I told her I was going through chemo though and that the clinic had given me the card. She then proceeded to tell me that this was only for cancer patients and that it is a support "feel safe" thing and that they only want cancer patients there. She then said I should call the Lupus Foundation to see if they will have anything for me. I was appalled. So basically, my disease isn't bad enough to get to use this service. I am going through the same treatment, but apparently I don't "Qualify" for a feel good program. She told me I could talk to her supervisor but at this time I was basically in tears and anger I didn't want to talk to anyone anymore. I don't know if I am being over-sensensitive here or what but I think this is crazy!!!

I also just got off the phone with my nurse, my white blood count has dropped again after chemo even though I got those injections so I will be starting another antibiotic today...great bring on some more drugs for my already messed up body! I am also meeting with my doctor next week to discuss changing my chemo drugs to a different one. He doesn't like that my WBC keeps dropping so much and wants to discuss the possibility of another one. I will have to see what the risks/benefits/etc are to decide if I want to switch half way through. I also woke up at 2:30 to some extreme pain in my kidneys. It has since resided but some pain is still there so they are going to do a urine analysis tomorrow to make sure I don't have a kidney infection. Please pray this is nothing! I haven't ever had kidney pain except when I got my biopsy so this is all new....maybe it's just my kidneys telling them to leave them alone!!???

AMEN!

I have FINALLY reached my out of pocket expense for my health insurance and now everything is 100% covered for me...well until January starts over again. Thank God there will be no more medical bills for the next 2 months!!!!!

My nephrologist has also lowered my dose on my steroids!!!!!!!!!!!!!!! I am so excited about this. This means he is confident that I am getting better and hopefully the lower dose will help some of my facial swelling go down.

Yeah for good news today!!!!

Another round down!

Well 7 hours of chemo and another round is done. Today was exceptionally hard for me for some reason. The time went by so slow and I was so bored. Thank you for all the people who entertained me with text messages:) I told Ross I need a blackberry so I can at least go on the Internet, however....he doesn't agree. (they have no Internet access or wireless..it sucks!) Luckily, the benedryl knocked me out for a good hour. My room also didn't have a bathroom which was unfortunate because every time I had to go to the bathroom I had to unplug the IV thing and wheel it in the hallway to the bathroom. This was very uncomfortable for me to walk through the halls of the cancer center, the youngest person there, and have people stare at me...I think I might request a room with a bathroom from now on.

I am super tired so I will probably go to bed by 8 tonight. I hope I feel better tomorrow so I can go to work refreshed. Getting injections tomorrow to hopefully prevent the low white blood count again so please pray this works and I don't get into the dangerous zone again.

Here is a video of Nolan army crawling. (Ignore Ross on the phone in the background!) He is so fast and I have to always be watching him now. I can't believe he is going to be 8 months old already this weekend!

Here is another video of Nolan saying "Dada" That is all he says now. I am working on him to say "Mama" but every time I say it he says "Dada". Go figure.....

Some good news is always good.....

Ross got a hold of the credit card company and after talking to a few people, they agreed to refund us ALL of our airline points & fees we have paid back to our credit card if we provide a doctors note saying there is no way I can go on the trip so that was good to hear!

Our newest and most random thing is that our house will be going on the market this week! This is a very exciting and scary thing for us! We are very random, I know, and then having a husband who is also a realtor doesn't help! We found a house we love. I dream about it every night. I have visions of the kids running around there and us being happy and healthy there. It's actually really freaky. So, we choose to put our house up for sale and if it sells..well then maybe it's meant to be?? All I know is keeping the house clean might be a pain in my butt!

The last good news is my creatinne lab work this week went way down which is great!! High creatinne means kidneys not working good. So mine going down=something is working hopefully!! This was great news to hear.

I have my next round of chemo on Wednesday this week. Totally dreading it but ready to have another round down and checked off my list!

Nolan is an official "army crawler" now! I will have to take some video and post it on here. It's pretty entertaining. He moves very fast so we now have to gate up the staires at all times!!!

Some people are so stupid!!!!

A lady told me yesterday that my face is so puffy she doesn't even recognize me anymore. Then she had the balls to say, "Well are you working out?" Like implying that my face is fat from not working out! I had to literally hold the urge back to not slap her. Some people are so stupid. (luckily she isn't a blog reader)

I know some people look at me and don't know what to say. Others say "you are beautiful" "I can't even tell" or "Oh it's barely noticeable" and while I appreciate these comments very much, I know they too are not true. I look horrible.

I want to give you all some information on the drugs I take. First of all, I take about 20 pills a day. The side effects of these drugs that I am experiencing are: weight gain in the face...this is water weight from the steroids it is not because I am eating everything in sight and not working out. I eat very healthy and workout as much as I can. I want to clarify I have not turned into a couch potato who doesn't care about their body anymore! Some people can actually develop anorexia from being on steroids as they get to where they don't want to eat so they won't gain weight. I now can see how this can happen. I can't sleep. This is also from the steroids. They make me hyper and basically give me ADD during the day. I do lots of cleaning because of this. Because I can't sleep, I eventually crash and am so overly tired I can't think straight anymore so I usually end up taking some sleeping medicines to get a good nights sleep. I am moody and have seriously...multiple personalities. One thing can just trigger me to go off. Trust me, ask my husband. Pretty sure he is ready to kill one of my personalities right about now. I am losing my hair, obviously this is from the chemo. I can wear my hair pulled back and it's fine but if I wear it down, it's pretty thin so I have been wearing hair extensions when I wear it down. These take me almost an hour to put in in the morning. My house is literally FULL of hair, I can't keep up with picking it up. I have chest pains, still not sure where these are coming from but they hurt and they suck and I wish they would just go away. My stomach is so bloated and is in constant pain. I'm assuming it is from all the medications in my system. So....this is a typical day for me right now ...yeah it pretty much sucks but it could be worse and it is temporarily and I tell myself this daily to get through the day. I have 5 months left hopefully and it will go by fast. I mean..I was pregnant for 9 months and look at how fast that went...I have an almost 8 month old now!!!