Granpa

Today was my check up with my surgeon to make sure I was healing ok and which I was. My appointment was at 10:40 and before I could get back grandpa passed away. My mom and Susan were with him when his blood preesure started falling and left us. It was very hard to watch my mom go through this.  I cried by myself and tried to find a way to explain to my kids that granpa had gone to heaven.

Granpa

Today my school started and im taking 2 classes, algebra and child psychology. Hopefully an easy semester with all im dealing with. I mentioned Granpa started getting bad the day before my surgery. Susan mom and me are taking care of him with the nurse coming by twice a week. Its hard when he tries to get up becuase he falls, we started telling him his legs were hurt and he couldnt get up. Sometimes he was in his right mind and sometimes he was in the past. He talked about travel alot which I guess was normal. I was on 30 mg and still detoxing so I still had alot of issues of detoxing and couldnt be around abunch of people. When my uncle started coming over to help them I started staying home and usually just cooked them supper. It was hard to watch him go through this.

School starts, 1st visit with Ramos

Haileys first day of school I dropped her off and she was very excited to go! I could not get over the way people were looking at me like "What did she do to herself?" Its very hard to go through what prednisone does to you, and I didnt need people reminding me of what I looked like, just let me enjoy my childs first day of school. I know I should have been able to just get over it and deal with my kids first day of school, but I did, it was after I left her at her class room that everyone seen me leaving and gave me all the looks. Its just hard.
Today was my first appointment with a rheumatologists that can diagnose any autoimmune diseases I may have other than ITP. We suspect Lupus becuase my history of infections, my white count being consistently low with my platelets, my hair falling out before the prednisone started, my joint pain, and these weird rashes I get on my legs when ive been in the sun to long or get out of the tanning bed which is a sign of lupus through sun sensitivity. Dr Ramos was kind of hard to understand but overall it was a good visit. He poked my pressure points and all of them hurt, I said no to a couple where he didnt think i was crazy. He ordered blood work and a back xray since thats the joint that seems to hurt the most.

Regular appointment

I had to go to see Dr Weber today. My echocardiogram came back alright I didnt have blood around my heart! I was told to stay on the protonix which is the antacid until I was off the prednisone. Hailey's meet and greet to start prek was also today. Its very hard to go in public looking the way I look with all this extra weight and fat acne face, but I braved it and went and got her started at school.

What are they going to be?

6 days after my surgery I had to go to the local hospital for a cbc to check my platelets again. 222!!!! OMG What in the world worked so well is all we kept saying? Even Valerie when she called me said I dont know what worked but im glad it did! I was told to start my drop in prednisone starting the next day to 40 mg. That drops withdrawals wasnt so bad.. just a little pain and tiredness.

Today is surgery day at noon at BSA day surgery! I go in get my iv and everything goes great. I am sitting there talking when they knocked me out so I didnt have to get nervous about that at all, and when I wake up I find that him taking my belly button ring scar was kind of like a mini tummy tuck.
I also find out that my platelets went from 106 to 129 from yesterday morning to yesterday afternoon. Something worked wonderfully well. I didnt get enough rituxan for it to be the reason, so what was it?

Oh happy day!

All I can think of when I go to my doctors appointment is please leave me alone for at least a week. Just leave me alone. Get me off all this shit and leave me alone. I know hes going to try to schedule a splenectomy. I am sitting there about to throw up and have a panic attack when the doctor walks in and says, "LETS DO SURGERY!"   OMG WHAT!! My platelets are at a 106 which is no where near normal but ok for my gallbladder surgery! I am sent to a surgeon who I would recommend to anyone for anything! HIs name is Dr McKinney In amarillo! He was great and explained everything and knew all about my situation and assured me I would be fine! Not once did I ever feel scared with him doing my surgery! He kept saying, do you need this? (talkin about my belly button ring scar) and I kept answering no. I was sent to do my pre op blood work and another chest xray was not needed thank goodness.
I guess I need to see this is the day my grandpa got bad. He had been dealing with colon cancer that was spreading for some time now, and we got a call during all of this saying he had fell and that Meals on Wheels had found him thank goodness. We are agravated we werent called sooner and we didnt know how we could get him picked up from the emergency room in Borger when im preoping at BSA. Thats the day they told us he couldnt stay by hisself anymore.
Also, Im at BSA becuase none of my doctors were comfortable with me having the surgery in Borger, they wanted me as close to Coffee Memorial blood center as they could get me.

One of the scariest days of my life

I decide that I am going to go into Texas Oncology and talk to Valerie and quit being a pussy about it. She assures me that is it not chemo and that I will be ok. I go in, have the IV put in, get a bag of fluids,  IV benadryl incase of a reaction, and oral tylenol. I had a little cough from whatever was going on with my chest so I didnt think anything about it after they started the rituxan and Im clearing my throat and coughing a little bit. O but the nurse did. He spun around like a gun went off with just a little tiny cough. I couldnt help but laugh and im sure he thought I was crazy. He turned my rituxan off and gave me more benadryl. I was instructed to relax and go to sleep. I tell my mom and cody that they can go do whatever they want now becuase I shouldnt have any more reactions with all this benadryl in my system. They leave and I go to sleep only to wake up literally feeling my chest and throat closing up. All I could say is Valerie its tight.. its tight. They immediately turned my rituxan off and gave me more benadryl. You would be surprised how much you dont freak out when this happens, maybe you know in the back of your head if you freak out you really wont be able to breathe. All I remember is my hands on my knees and concentrating on breathing and hearing my wheezing that was so loud it felt loud enough for the whole chemo room to hear. The benadryl was pretty fast acting and in a few minutes I could breathe normal but now it was time for my little freak out. OMG I JUST ALMOST DIED BECAUSE OF THIS SHIT! Im told that my body is not going to accept the rituxan and this is not going to be a treatment choice for me. All I can think of is Dr. Periman saying if this didnt work we would have to take my spleen out and I was not ready for that. I was so scared. Apperently my feeling like my wheezing was loud enough for the room to hear wasnt just me becuase he told me that he could hear it across the room after I woke up. I never want another treament again. I get home and feel like shit and im tired. O yeah, on top of the benadryl they gave me for the 2 reactions they gave me steroids in my iv on top of my steroids I had already taken for the day. I had 260 mg of steroids that day. I get home and I cant lift my head off the couch becuase the pressure is so bad in my head if I lift it I cant see. Im tasting so much blood and im afraid to go to sleep. I write down everything that Cody might need to know if I dont wake up or something happens with all the numbers and instruct him that they are not to give me anymore steroids in any form or ill hurt him.
I guess I need to tell you how rituxan it supposed to work. It kills the production of your B lymphocytes which is part of your white blood cell count. It is thought that these lymphocytes might be what is tagging my platelets for death and maybe we could stop it if we stopped the lymphocyte production. I am informed that it is actually "pretty kool" becuase it is a MOUSE antibody WRAPPED IN A HUMAN ANTIBODY. NO fucking wonder I am allergic to it, Do i look like a damn mouse to you?

Withdrawals

No one tells you coming off this shit that it hurts so bad. Just the 20 mg a day drop hurt so bad I almost couldnt take it. Every joint in my body hurt and I was taking pain meds like they were candy. I had to take 3 naps just to make it through the day for a couple days. I called Valerie and she said that its called steroid withdrawls. Are you kidding me. I dont know how much more I can take.

Not good enough

I have another appointment today with my regular hematologists. My platelets came up to 74000. The IVIG worked, but if it had worked good enough I would have been in the 300's he said. Were beginning to wonder if all this is worth taking my gallbladder out becuase a normal ITP patient would have shown more improvement by now. He sets me up with a internal something doctor to see how bad my gallbladder really was and if we could just leave it. He sets me up an appointment to try rituxan another IV treatment on that Friday and dropped my prednisone to 60 mg a day. THANK GOD.