Long time no talk!
Well here is an update on my status. The last time I blogged I said I was going to get an MRI. The MRI showed all the bad activity to be gone…BUT….I had new activity. The doctor said she was not worried about it though.
About a month ago I had to do 3 days on i.v. solu medrol. I felt some weird symptoms coming back. The doctor (and myself) felt my body cannot be trusted so I did them just in case. They seemed to help.
Basically…I was not cured. But, I did get rid of all the damage and hopefully reversed some, so I do not regret it.
I just have to continue taking things a day at a time and be thankful that I am doing okay now.
Nighty night!
My hubby Preston and I on Christmas Eve
Marisa
Hello!
Today is 9-3-09. I have an mri today. All has been a lot better with me. There are a few ms symptoms that still puzzle me. I am anxious to see how this mri turns out. I guess it could be that I have permanent damage that might not go away. Surely hope not…
My counts are recovered!!! Yay I am out of prison. My wbc are 6.4.
I am free to be in public and eat out. For two more weeks (so a month after chemo) I still cannot eat raw fruits and veggies, sushi (ew) and buffet style restaurants.
We went to order this other wig I had my eye on. It is shorter and sassier! It comes in Thursday or Friday.
So, no more neupogen shots. I just have to go back on Thursday to get labs and also they remove the picc line.
So, I won’t be updating this regularly anymore unless an issue comes up. I will however, continue to update this blog about my MS progress. I should have an MRI coming up soon to see if all the imflammation is gone.
What I take from this experience is that it is so worth it. If you are given the opportunity then take it. My dad, ironically was at a party last night and there was a nurse who works in the hicy dept. of Hopkins. She said amazing things are coming out of this treatment and that they are having better results with this treatment for MS than for cancer. So carpe diem if you can!
Thank you for following along with me on this journey. I am happy it is over, but it was in NO WAY as bad as I expected, so keep that in mind if you are considering it. Just look, it is day 17 and I am better.
If anyone has any questions about the treatment feel free to contact me at: mpepper6180@gmail.com
The study is at the MS Clinic at Southwestern Medical in Dallas. But it does not begin for a few more months.
xoxo
Well I woke up at 5:30 this morning. That seems to be the norm for me lately. Did my usual routine then mom took me to get my neupogen shot. I am in a weird mood today. I think I am tired. I ended up taking another hydrocodone last night because I could not take the pain anymore. This time it just made me very tired. I almost feel hungover today. I guess it could be several days of getting up before 6am and staying active as well.
I changed my sheets and put my bedspread in the washer. That wore me out. But I took a break and then vacuumed my room. I want everything to stay as clean as possible to avoid any infections.
My hair is really falling out today. It takes 2-3 weeks to fall out and today is 2 weeks from the start of chemo. It takes about a week to all fall out.
Going to rest up now.
More later…..
Well you think you are prepared until it happens. My hair was just falling out all over the place so I had Preston cut it. I look like G.I. Jane. It was traumatic. I cried and cried. But I knew this was going to happen so I have to move on. Preston says I look beautiful no matter what.
Nighty night! xoxo
So last night my legs started to hurt very badly. But this is a good thing. It means the neupogen is kicking in and my counts are starting to recover. Anyway, I took some tylenol and it did not work so Preston massaged my legs which seemed to help a bit. At least enough for me to fall asleep.
This morning I woke up and went to get my daily neupogen shot. The p.a. also gave me an rx for hydrocodone to help with the pain. I told mom she could go home today and I could fend for myself. So I did a few loads of laundry then got really hot and started sweating. My temperature went up to 99. So, I am taking a break now and it is going down. I always do this. I start to feel better and want to do stuff around the house. Then I am quickly reminded that I have had chemo (a bunch of it this time) and that snaps me back into reality that I need to take it easy.
One thing that worries me is I still have an ms symptom. A few times a day my eyes blink twice really fast. Also, I have a tremor in my left hand sometimes. But the tremor started AFTER the chemo, so I know that is a side effect of the chemo.
My hair is starting to fall out now. A bunch was in the sink this morning. A few weeks ago I had cut it to about two inches so it would not be as traumatic for me. I am prepared to lose it and kind of ready too. Sooner I lose it the sooner it grows back, right? I will post a pic of my short hair today. I want this site to help people get prepared if they are having this treatment. I know the blogs I followed before this treatment had pictures of every stage and they helped me prepare for it. So no vanity here, just honesty!
Okay well I am going to take it easy now and make some jewelry.
more later…….
Oh my. I learned something today. Hydrocodone +Marisa=VOMIT. It made me so nauseous and I threw up my soup and all the water I drank today. It was ALOT of vomit. I felt better for a while but now I am trying to drink the water I lost and I kind of feel nauseous again. Ugh. Going to lay down now and lay off the water.
I must have started feeling better because I finished the laundry and baked Preston a lemon cake. It is very important for me to remember to do things in small segments. Start a load of laundry, take a break….and so on and so on. Breaks are good. I would hate to come as far as I have and get a last minute infection. My dr. told me that the one person who has died from this treatment died because they got an infection. About 50% of people have to return to the hospital because they get a fever, which means an infection. It is best just be safe and stay in your house. Also, no raw fruits or veggies or outside food of any kind. The doctor says you never know who has touched it and if they washed their hands. I wash and purell my hands so many times a day that they are very dry.
Pres should be home from work any minute so let me go get his dinner ready. I also want to surprise him with the cake. He LOVES lemon cakes.
Nighty night! xoxo
So I am still in the process of getting my second pint of blood. It has not been as bad as I thought. We learned more about red blood cells today. We should have been looking at the Hemoglobin (HGB) and the Hematocrit (HCT).
These are the normal ranges:
HGB—-> 12.1-16.1
HCT—-> 36.8-48.7
My levels right now (before the blood) are:
HGB—->8.5
HCT—->24.9
After my two pints of blood today she said my HGB will go up to about 10 and my HCT will go up to about 30.
Basically, long story short I will feel better and have more energy.
On the upside my WBC count went up to —-> .2
They are expecting my counts to shoot up next week. Thank the lord–because I am sick of being in my house! Also, it is torture watching Preston clean our beautiful pool knowing I can’t be in it. But soon I will be. I even ordered a few swim caps and they are really cute! I know–swim cap and “cute” do not go together, but believe me they have come a long way in swim caps!
I was telling mom that I thought it was funny that my blood type is B+. (“be positive”) LOL
Okay well I have about another hour left and then we can go home.
I will tell you how I am doing later.
So I am home now and feeling great. The differences I notice are that my heart does not pound as loudly as it did when I get up to do something and more energy. I could not eat around all that nasty blood so I was famished by 3:30pm when we got home. I had lentil soup and then mom made me one of my favorite dinners—salmon and a red potato/green beans veggie mix. It was delicious! (shout out to you Geoff) 
So I am attaching a picture of my wig and also one of the swim caps that my mom liked the best on me. I have to tell you a funny story. When I was trying on this black swim cap I had it on backwards and I did not know. My mother was laughing hysterically at me and I was like “What–why are you laughing”? She replied “Because you look like a dork”. LOL My mom called me a dork! It was really funny. You might have had to be there, I don’t know.
So now I am going to relax and wait for my hubby to get off work at 7pm.
Nighty night!! xoxo
Not much to report today. Same status. Just getting nervous about my blood transfusion. They said I have to sign waivers and those are usually things that tell you about the many ways you can die. I know the chance of that happening is very slim, but it still sucks hearing it.
Mom brought over more lentil soup. We are hoping they will do my labs before the transfusion just in case there was a slim chance they changed.
I kind of feel like they might have gone up. Yesterday I never wrote any more on the blog because I was sleeping most of the day. I was so tired because of the anemia.
We will be going in at 9am and they said we will be there a minimum of 4 hours. Ugh
Nighty night! xoxo
So it is official I am at 0. Well technically .1. Also found out that my rbc went down to 3.10. So, I am scheduled to get 2 pints of blood infused on Friday. 
