2nd discharge..... For those that come behind me.....otherwise, skip down to medical MJ..First, I want to tell you about the 2nd discharge and what to expect, what not to expect, and hopefully save you some headaches, not literally :(, with medications. First, always, always make sure that your name is the name on what ever sheets of paper are being given to you. For real. Also, it is very important to stay organized and have someone check behind you.
With discharge, any appointment, and when ever you ask for one, a list of medications that are ordered for you will be printed out. I dated the top of this sheet of paper from my first discharge, 11/22, to 2nd admission, 11/27. I then put beside the medications which ones are PRN, the common names for some of the meds I didn't know or are referenced differently often then written, and high light any must remembers such as only take for the next 4 days, etc. For the PRN meds, especially the anxiety meds and pain meds, I put a date down of when I took the PRN meds to be able to map out side effects. It is hard to remember with chemo brain so in doing a little documentation, I can see now that my migraines start about a week after being on the oral chemo again at 100 mg. I can also see that the pain medication didn't help much today and that there may also be something else going on as well. During my first week at home, I had 3 medications discontinued and 2 new ones start. I made notes on the same list and added the new medications to the bottom. Of course, then you have to come home and go through your fancy pill box and take meds out and put new ones in..... party.
So when I was discharged yesterday, I got a new med sheet. Most of the meds were the same, some of the doses were different, and I had a new one for PRN nausea. It would be very easy to get confused and then purchase medications that you do not need, or do not need yet, and have tons of bottles of extra medication laying around. The discharge coordinator and I went through my previous list of medications and compared it to the new list. I decided not to get the prescription for the PRN nausea because I already had one and have not used it yet. I was only home for a week so I knew I had plenty of the other medications and would be back for the 3rd admission in 3 weeks. Out of all the medications, I ended up only having to get 1 refill. Again, I put needed info on the sheet and will start documenting the things that I want to remember. It's great to be able to give the docs clear info so they can make the best decision, well, so you both can make it. It's ok to ask why, how, when, and what the heck is this for?
Medical MJ........Well, coming home, I'm sorry, recovering at home from chemo, has been a little harder than I thought it would be. This whole week has been harder than I was told or could image that it could be. I'm starting to have the migraines again from the oral chemo, just about the same time after starting it the first time, and I think I'm still having headaches from the LP's. It is killing me that I can't take care of myself or my daughter.
See the first go around, they have to recover in the hospital, after that, they shoot you up and then ship you out. Luckily, I'm able to follow up with GA cancer in Athens for my lab work 2x this week, 1x the next, and then see Dr. K at Emory the 17th. We will decide then, what day I'm coming back, probably the Monday after Christmas. At the appointments this week, it is more likely that I will need to get platelets or a transfusion because this is the week that my counts will be super low. If that happens, I'll have to go to Athens regional and spend goodness knows how long, you wouldn't believe what it takes to just get blood. I thought they match your type and hook you up, nope. Note to self Heather, bring something to do and tell the person that takes you to bring something to do. Chit chat when you do not feel well is not fun and neither is staring at each other. I go on Monday at 10 am to GA cancer and hope that it is quick and easy!
Not sure what I'm going to do tomorrow about the headaches. I may call in to see if I can stop the oral chemo, or reduce it, or just give up, just kidding, we will see how it goes tomorrow.
WELCOME
Hello,
Welcome to my Blog! Yes, I have been in the fight of my life against Leukemia, insomnia, depression, side effects of medications, molting skin, pooping my pants and this list goes on.... however, I still love my life, and that's what this blog is about Real Life. I hope to meet others who trails have brought them closer to the Lord and molded them for the next step in God's will. In January 2011 , my family, physician, and Be the Match was featured on a Fox 5 news story about bone marrow donors and transplants. In March, I was interviewed on Atlanta and Company along with Be the Match. I was chosen to sing the national anthem at the Be the Match Run last year and will also be doing it this year, along with some other songs. My team, no thanks to me, raised over $4,000 and raised more than any other team! Please join my team this year or consider donating here at the Run those Stem cells out ! Team I was also chosen for a patient advocacy panel for the international council meeting at Be the Match in MN in November. How exciting!! I ended up not being able to attend due to the relapse. I had hoped I could help raise awareness about how easy it is to sign up to be a donor and how many people need your help! Please go to bethematch.org and sign up! I was able to have my bone marrow (same as stem cell) transplant at the end of March thanks to a 22 year old donor oversees that I hope to meet her one day. As I came up on my 6th month mark and continued to add more normal activities to our lives, I relapsed, meaning that the that the cancer had mutated and the leukemia came back. I spent 2 more weeks at Emory and some other nights here and there and now I'm on a drug from the FDA. I have a compassion waiver so I am able to get it. I have to take it day by day sometimes hour by hour. Time keeps moving and my little girl is growing up. I'm lucky that I'm getting to see it. I continue to praise God for his wonderful blessings he has shown us including my wonderful husband Jonathan, baby girl Evalyn Rose, supportive family and friend, great medical care, new readers, and the chance to make a big difference, even if that means being a Lab Rat.
God Bless You!
Please read, comment, enjoy, learn, grow, LOVE LIFE.
Most Recently I have started a booth at a local consignment store with handmade jewelry from friends, crafts, and my own art from recycled materials. It is called DAY by DAY. God was very clear with me starting this. Please look over to the right of blog and click on Day by Day to see some pictures. I'm just getting started but I am taking orders from people that I know. You will be able to personalize items, etc. I just haven't decided how I will be selling them via internet yet. But for now, the jewelry is at A Weekend A'fair in Athens, GA and will hopefully be at some stores downtown soon.
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